# Picayune Lagniappes or, A Little Bit of Nothings



## Suzy623 (Sep 13, 2019)

My trials and tribulations as a child were nothing compared to my trials and tribulations as an adult. And, in looking back, the adult years were pleasant compared to the trials and tribulations I'm facing as a senior adult.  

I was born 18 months after my brother and my sister was born 5 years after me.  The three of us had a fairly normal childhood I guess. When I graduated high school I got married and moved about 2 hours away; my brother was drafted into the army and was in Germany; thankfully he wasn't sent to Vietnam.  My sister was just entering high school.  This will take forever.....fast forward 20 years.

My brother had 2 kids when he divorced and married his second wife.  My sister had married but divorced within 2 years.  She remarried and had 6 children (my brother referred to them as her 'litter'). I had 2 children and divorced. Then I married a man who became verbally abusive over time and continued to 'improve' on his abusiveness until I retired 6 years ago and left him.  All of our children are adults now with children of their own and a few of our grands have children.
About 8 years ago, my brother was diagnosed with prostrate cancer. It was the first time anyone had to deal with cancer in my family so we were all distraught and worried and tied up in knots. He went to Johns Hopkins for surgery and everything looked okay afterwards.  He went back to work and went on with his life. On his 2nd year of being cancer free they found a cancer in his thyroid. The thyroid cancer was treated and his 5 year follow-up showed him clear of cancer. The whole family thought we had survived the worst scare that would ever hit us. That pretty much sums it up and brings us to 5 years ago.  

Five years ago my mother, who was 84 at the time, was diagnosed with follicular lymphoma. She underwent radiation but they were not able to radiate a spot on the back of her lungs but it went into regression.  She had 1 more radiation treatment to finish the course when my father (also 84) had a stroke. I took mama for her last radiation treatment and from there to see my daddy in the hospital so she could show him her 'Certificate of Completion' for the course. Daddy was in the hospital for over a week and then went into rehab for 2 months. The day my brother was bringing daddy home, my sister in law, my niece, my sister and her 6 children were at the house and we were all waiting for the arrival. You wouldn't believe the noise around us with everyone trying to talk over everyone else and the grandkids running around adding their noise to everything. My sister got a phone call and when she was through she walked toward me and, as sisters are sometimes, I knew she had to tell me something so I walked toward her. She whispered that the doctor just told her she had cancer but not to tell anyone else until she could process it and find out more. My brother arrived with my mother and daddy and we all made more noise and laughed and enjoyed the time together. We were all happy that daddy had survived the stroke and only had a slight limp in one leg. But he had already been diagnosed with Alzheimer's and it was more noticeable after the stroke. Now I'm getting ahead of myself so let's back up a bit in time.

My sister had been having bad problems for 2-3 years with rashes that would turn into raised areas on her skin.  She had several biopsies but none of them gave any indication to what was going on.  The doctor treated it like a common skin disorder, with creams and such but kept sending her for different tests. I took my sister to one of her doctor appointments and I waited in the waiting room while she went in to see the doctor. She called me and said the doctor was talking cancer and she needed me there to hear what he was saying.  The doctor said he had run every test he could think of and it comes down to cancer but he couldn't determine where the cancer was or what type it was. He assured us that we would get to the bottom of it and try not to worry until we had specifics to worry about and that he could be wrong. He said a lot of cancers are curable and it could be just a skin type. My sister had been seeing this doctor for several years and she liked him because he was blunt and upfront with her (neither one of us likes to hear BS from our doctors).  He wanted to send her for one more biopsy. 

Now we're back at my daddy's home coming and the phone call my sister received.  Later that night she told me the dermatologist was the doctor who called and he named a cancer she had never heard of before and she couldn't even pronounce it. She had to be in his office the next day anytime before noon.

....next entry we'll cover a rare form of cancer and a liver transplant and may even get to a stem cell transplant......


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## Suzy623 (Sep 14, 2019)

A little more background on my sister.  She married a man with the Coast Guard and they had 6 kids.  They are all adults now but when their 2nd child was born (a son) they were stationed in Puerto Rico. Jacob was just a couple weeks old when a neighbor convinced my sister into taking him to the doctor because he looked so jaundice.  After a few blood tests, the base doctor arranged for my sister, her husband and Jacob to be flown to the hospital in Bethesda, Maryland.  While in Bethesda, there were dozens of tests, re-tests and biopsies performed on Jacob.  The diagnosis was that he had A1 Antitrypsyn Deficiency.  He was the youngest person in the world to have that deficiency and the treatment called for a liver transplant.  Jacob was just a few weeks old and therefore too young to have a transplant. Back 35 years ago they rarely performed transplants on adults, much less children and absolutely not infants.  Because Jacob needed to be near a doctor with knowledge on this illness, the military trained a doctor specifically for Jacob and stationed the doctor at the military base in Biloxi, MS.  Then my BIL was re-stationed to Mobile, AL where they would be near family and near the doctor in Biloxi.

The doctors made the decision to do the transplant when Jacob turned 6 years old.  My sister made dozens of trips to the doctor at Keesler Air Force Base and Jacob was carefully monitored as he grew.  Eventually he was put on a diet and had to have sugar in everything. He couldn't eat protein because of the damage to the liver but he needed weight on him before the transplant. So my sister, who by now had a set of twins, had to feed Jacob as much sugar food as she could while trying to get the other 3 children to eat meat, vegetables, and fruit.  

Finally, after seemingly waiting a lifetime, Jacob was 6 years old and they began setting up for the transplant.  It was decided the transplant would be done at Oschner in New Orleans.  All the arrangements were made and the family went to New Orleans. It took a few days for a liver to be available and as it was being flown to New Orleans Jacob was being prepared for surgery.  My sister and BIL as well as my parents waited nervously for several hours for the surgery to be completed.  It was a lengthy recover but after a week the doctors were all happy and pronounced the transplant a success.  My parents returned home and my sister and BIL stayed at a Ronald McDonald house with Jacob for the remainder of the recovery process.  If I remember correctly, they were in New Orleans for about 3 months until they were able to return back home.  Jacob still needed special care through the doctor in Biloxi but that slowly became fewer and further between visits as he continued to improve and life settled down to a routine and went smoothly for the family.  Fast forward to my sister's diagnosis of cancer 4-5 years ago.....


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## Suzy623 (Sep 14, 2019)

My sister's doctor referred her to the cancer center here in Mobile and I went with her to the visit. The cancer she was diagnosed with was a form of lymphoma called Mycosis Fungoides.  It was a rare type cancer and there was no cure.  Dr. Angel was the cancer doctor most familiar with this cancer in Mobile but she sent my sister to the expert in the field, Dr. Duvic at MD Anderson in Houston, Texas.  The first trip was made via air through Pilots of Christ but no family could fly with them, just the patient. Fortunately, we had family in Houston and they picked her up at the airport and then drove her to MD Anderson the next day for her appointments.  When she finally got back home she had a stack of reference documents and pamphlets and she had been staged with stage 2b mycosis fungoides (or, as she and I referred to it, MF).

She had to go to Houston about every 3-4 months but Dr. Angel did as much of the treatments as she could, at Dr. Duvic's direction, so a lot of her treatment was in Mobile. She was started out with a chemo treatment referred to as 'CHOP'.  She lost her hair, was nauseous and weak for a week then had to go for another treatment.  After each treatment she had to get shots to increase her white cells because the CHOP almost depleted them.  After a series of CHOP treatments, she was changed to another chemo treatment; then another; then light treatments aimed to treat the rashes on her body.  

We got to where I would drive us to Houston because she could not be in the closed atmosphere of a plane.  We would take the trip in two days even though it would normally take about 8 hours to drive straight through.  But she couldn't sit in one position too long and would get sick if we rode for very long.  She and I had loads of fun on those trips and lots of laughs.  We did this every 3 months for over 2 years. Back home she would be put on another treatment to try; in Houston she would be tested, stuck and had to pose for pictures of her rash spots.  After one of these visits to Houston, Dr. Duvic told her to come back in 3 months packed to stay for about 6 months.  She was going to have a stem cell (or bone marrow) transplant. Boom!...just like that.  She was re-staged to Stage 4.

We spent the next few weeks packing what she would need after she had the transplant and with the season changing she needed both warm and cold weather clothing.  We boxed those up and marked the boxes according to season and had them ready to ship to my cousins when time got closer.  Of course, she also needed a stem cell match and, according to Dr. Duvic, the best match would come from one of her children.  As stated, she had 6 adult children so we felt there would be no problem.  Two of her children could not even be tested; Jacob (because of his transplant) and her youngest daughter because she had the Alpha 1 deficiency too, it just had not given any problems for her yet.  So the other 4 were tested.  The closest was her youngest son and he was just a half-match but Dr. Duvic said that was the one they would use. 

When she got back to Houston she was again tested, stuck, prodded and posed for pictures.  She also met with the transplant doctor who would actually do the procedure.  When the transplant doctor found out she only had a half match to work with, she said they would do the transplant only if it was a full match donor, otherwise my sister would be facing another transplant within a year.  During the visit with the transplant doctor, Dr. Duvic called and said she wanted my sister to come to her office. When my sister got to Dr. Duvic's office she had another bit of news.  She had been re-staged to Stage 3 and no longer qualified for the stem cell transplant. So my sister came back home not knowing what the next step would be. 

Tomorrow I hope to update from last year to present time but may have to split the update because it's been a very trying period in our lives.


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## AnnieA (Sep 18, 2019)

Wow, @Suzy623   You have/are giving to much to the people you love!   So sorry to hear of all their health problems.


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## drifter (Sep 18, 2019)

I see you are a new member, so welcome to the forum. There are lots of good people surfing this place from time to time and I hope you hang around and get to know some of them. Your story is so full of sadness and heartache. When a doctor speaks the word, cancer, it doesn't matter how loud or how softly the word comes out of his mouth it gets our undevided attention. Cancer is a scary word. You have had your share of life's tribulations. I have wondered sometime myself as we work and live and go through this life, if this is not the hell from some previous past life we lived and may have been sentenced here. At times I have felt that way. I know that is an unreasonable thought process but I know too that many illnesses as you have described can make us wonder. If you haven't already, after you finish what you want to say in this diary section, look the forum over and if you find an interesting conversation in progress, jump in anywhere and participate if you've the notion. Or continue on with your diary. Again, welcome, and i hope you come to enjoy this place where some of hang out from time to time. Cheers.


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## jerry old (Sep 18, 2019)

had to goggle picayune lagniappes  
cancer-bad, real bad


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## AnnieA (Sep 18, 2019)

drifter said:


> I see you are a new member, so welcome to the forum. There are lots of good people surfing this place from time to time and I hope you hang around and get to know some of them. Your story is so full of sadness and heartache. When a doctor speaks the word, cancer, it doesn't matter how loud or how softly the word comes out of his mouth it gets our undevided attention. Cancer is a scary word. You have had your share of life's tribulations. I have wondered sometime myself as we work and live and go through this life, if this is not the hell from some previous past life we lived and may have been sentenced here. At times I have felt that way. I know that is an unreasonable thought process but I know too that many illnesses as you have described can make us wonder. If you haven't already, after you finish what you want to say in this diary section, look the forum over and if you find an interesting conversation in progress, jump in anywhere and participate if you've the notion. Or continue on with your diary. Again, welcome, and i hope you come to enjoy this place where some of hang out from time to time. Cheers.



@drifter    She is new and dealing with so much more than her sister's cancer.  See her introductory post. She's the in home primary caregiver for both parents with dementia. I look forward to getting to know this loving, giving person! Her family members are so blessed.


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## drifter (Sep 18, 2019)

Thank you for sitting me straight. I thought i knew what I was doing. Obviously I have some catching up to do.


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## Suzy623 (Sep 18, 2019)

AnnieA and drifter, I've read quite a bit on the site and really enjoy getting to know the members.  There are so many members with wonderful insight and a gusto for life.  I tried a few other sites before I found this one and I feel very comfortable here.  As for my diary, I've thought over time that I really should keep a journal of everything going on around me.  And I started a couple of times but just couldn't keep up with it.  This seemed to be a logical place to give more details of my life so people could get to know me better in their own time and it also gives me the opportunity to write some of my emotions out of my day-to-day stress.  

My next entry will be coming up shortly...I've had some minor issues with the elves  and with my health  but all's well.


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## Suzy623 (Sep 23, 2019)

Several months prior to my sister's call for a stem cell transplant, my sister's oldest son, Jacob, came by. Nothing unusual at first, he and his wife usually came by every few days. But this turned out to be a different type of visit.  Jacob had been having some health issues.  Several years before this he had stopped taking his anti-rejection medicine from his transplant when he was 6 years old. Looking back, it was not the thing he should have done.  My sister ended up convincing Jacob to go to Oschner's to get a check up.  He was gone for about a week and then came back home to await the decision on whether he would need another transplant. A couple of days after he got back he started throwing up blood. Lots of blood. At first we thought it must be the strawberries he had been eating but as it continued, they rushed to the local hospital with him.  Within 12 hours his liver function had dropped dramatically and he was in a coma.  He was in a coma for almost a month when Oschner's sent a medical plane to Mobile to pick him up and fly him to Oschner's in New Orleans. They got Jacob stable and now were waiting for a liver for him. Time was of the essence at this point because the transplant had to be performed before his system started shutting down completely. In the middle of the night they finally found a liver but it was an at-risk liver. Appears the donor had taken drugs at one time but the liver itself tested clean of drugs. This option was the only one they had so the decision was made to go ahead with the transplant.

Jacob was 6 years old when he had his first transplant, 30 years old with the second. The recovery was longer and several things went wrong. First, he had a reaction to the anti-rejection medicine, then he had a reaction to another medicine he was given.  My sister, her ex-husband, Jacob and Jacob's wife stayed in New Orleans for over a month before Jacob was finally released to go home. 

When he got home everyone noticed that Jacob was different. My sister said that during the coma Jacob's liver function had dropped and that released a chemical reaction in his body that affected the brain. He may/may not improve to become the Jacob we once knew. Once home he again had to see a doctor who was familiar with the transplant but also the A-1 deficiency. The closest doctor was in Birmingham, Alabama. On the second visit, the doctor in Birmingham said they plan to get a doctor to Mobile within a few months to oversee Jacob's recovery. Jacob made 2 more visits to Birmingham and was then referred to a newly arrived doctor in Mobile. Now his lab work could be done in Mobile and he didn't have the expense of an overnight hotel stay in Birmingham. He still had other doctors to see since his transplant.  He was seeing an orthopedic doctor and having re-hab to improve his motor skills. The side of his brain that controls his behavior also affected his motor skills. He was also seeing a psychologist for his mood swings. 

Two years after his liver transplant he was released to work with restrictions but still had to see the doctor for follow-up visits twice a year. He got a job at Walmart which paid less than a third of what he was making before the transplant but he had to start somewhere.  Maybe as a result of the stress of the transplant or because she couldn't accept Jacob as he was after the transplant, Jacob's wife left him right after he started working. Now, 3 years after the transplant he's happy working at Walmart and although he sometimes has to wear a brace for one leg that is still weak, his motor skills have improved. His behavior has smoothed out a bit and where he used to be irrational quite often he has learned to deal with those feelings and rarely has over-reactive responses to little incidents. He is also happy being single. He still isn't the Jacob we once knew but we understand him and made adjustments ourselves as his family.

Even during my sister's fight with cancer she was glad she was able to be by her son's side when he needed her.


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## Suzy623 (Oct 6, 2019)

Have had so many things going on lately that I had to re-read what I had written so far to remind myself where I left off.  I'll cover the last year or so.

My sister's cancer was getting worse.  She would go for one treatment or another every week or two.  One treatment was medicine she could take from home.  One month supply was $125,000. She took that treatment for about 2 months but it wasn't working on her cancer. Mycosis Fungoides attacks your body in several ways. The rash on the skin, the tumors in your body, the organs and the blood.  

My sister's rashes became plaques on her skin and then tumors that would rupture. I spent almost every night wrapping and tending to her wounds. Her skin would flake off so badly that her sheets, blankets, and pillow cases would have to be changed and washed daily.  And after a shower the tub had to be scrubbed because of the skin that settled on the tub. 

If her temp got up to 100.2 it was considered a bad sign but she wasn't allowed to go to the ER unless she got the okay from the Cancer Center.  She was taking morphine, norco, zofran .. I can't remember all the meds she was on. One treatment she was on (Interferon I think) started giving her such bad headaches that not even the morphine and norco together were easing it.  

Cancer Center said take her to ER since it was after hours. At the ER they gave her a shot of delaudid (sp?).  That eased the pain some but it didn't last long. We were at the Cancer Center the next morning. They took her off the interferon. There wasn't much else to try with her cancer. They had tried every treatment available.  

Her rashes kept getting worse and hospice was sent in to tend the wounds. I was grateful for that because I got to the point where I didn't know whether they should be wrapped all day or left to air for certain period or what meds to use on them.  Some of the bandages would cost $15 for one bandage to cover one tumor.  It was expensive no matter how you bandaged it. Hospice covered the price of the bandages and a nurse came out two times a week to treat the wounds and I followed their instructions to treat the wounds on the other days.

My sister did not want her children to know how bad things had become but I was finally able to convince her to let them start treating the wounds because if I became sick with just a cold then no one would be there to help her. She finally agreed so her daughters would come when the nurse was there and they learned to treat the wounds. That actually freed up some of my time in the evening so I wasn't running around trying to clean the kitchen, feed the dogs, get my parent's meds and my sister's meds set out for the night and all those other things that have to be done. 

She started running low grade fevers and most of the time she wouldn't tell anyone. She would just take tylenol and motrin until she could get the fever down.  The times she would tell me were times when she wasn't able to get the fever down and after chewing her out for not telling me sooner, I would have to force her to take some blankets off and use cold wet clothes to wash her down to break the fever.

Next entry will be from Thanksgiving 2018.


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## Suzy623 (Oct 7, 2019)

Thanksgiving 2018 was one of those days that just didn't feel 'right'. Those days where you can't win for losing, nothing you do turns out right.  We've all had them at one time or another but even with that feeling lingering over me all day I was able to fix us a nice meal. There were 16 family members sitting down to eat. It was a shock to me that not only did everything turn out well, it was all warm when the table was set and we started eating.  It turned out to be a very nice family meal and we were all thankful that we had good health and shared some good times.

My brother turned 68 on December 11, 2018 and my mother would be celebrating her 89th birthday on December 14. My brother and his family usually would come over on December 13 to celebrate his birthday and my mother's at the same time. On December 12, I received a call from my SIL saying that they think my brother had a stroke and they were on the way to the hospital.  My sister had a chemo treatment that day and had to stay home but my parents and I rushed to the hospital. They were running tests on my brother to determine the problem. Bottom line was that he did have a stroke.  He had what is known as a pons stroke which, from what I understand is the area near the brain stem. According to the doctor, a pons stroke is the worse stroke you can have. He was in ICU but was 'locked in', meaning he could hear us and knew what we were saying but could not respond. He was completely paralyzed, could not even move his eyes, and couldn't breathe on his own. My SIL had to make the hardest decision of her life. My brother was moved to the hospice floor where they removed the breathing tube and he passed within 30 minutes.

My sister had told me several times that she was afraid she would die before our parents and she didn't want them to go through that. She was using that as motivation to fight her cancer.  None of us ever imagined that my brother would leave us like he did. It was traumatic for my SIL, her daughter and granddaughter as well as my sister, my parents and, of course me. Just 2 weeks earlier we were all sitting around the table eating our Thanksgiving dinner and talking about our good health and the good times we have had.

On Monday, December 17, 2018 we buried my brother.  It was a week before Christmas and my father's birthday. Although we had a small birthday cake for daddy, we agreed to not have Christmas that year, just to forget the entire day.  None of us had the heart for it.  We were grieving over the sudden death of my brother. A lot of people go through losing someone close to them and each of us deals with it differently. My immediate family (my parents, my sister and I) was dealing with losing someone who had been a large part of all our lives.  I understood why my sister did not want to die before our parents.


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## drifter (Oct 7, 2019)

What can one say? Nothing that will help. You've had a tough row to hoe, more than your share. I sincerely hope life gets less rocky for you and you can enjoy life rather suffer through it. Yours is a heck of a story but you told it well. We don't know why so much bad happens to good people. Maybe there's no point to it at all, or why a diease seems to run in a family. Nevertheless, I wish you well.


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## Suzy623 (Oct 7, 2019)

Finally, 2018 gave way to 2019. Daddy Elf's Alzheimer's became more noticeable and he was losing interest in most things around him. He became quieter, turning in on himself. And he has never again mentioned my brother's name or referred to him in any way since my brother died.

Mama became Mama Elf. Where her Alzheimer's was rarely noticeable except to those who knew her real well, she started having a lot of difficulty in finding the right words to say to express herself. Unlike Daddy Elf, who was quiet and subdued, Mama Elf would say anything. Anything. And the red-headed temper she had tuned and honed her entire life (and had a reputation for) would raise it's wrath at anything. Anytime. Anywhere. At the grocery store she would push her basket down the middle of the aisle, telling people to move out of her way. I tried to explain (no rationalizing with Mama Elf!) that some people may think she's rude. Her response? "Let them think what they want to think!" That became her response to almost everything.

As mentioned several posts back, mama had been diagnosed with lymphoma about 5 years ago.  She had another pet scan scheduled for early April and a visit to the doctor later in the month to get the report results.  Unfortunately, two days before her appointment to get the results, she had to be admitted to the hospital with severe stomach pains. She had diverticulitis and a bad UTI. I called the cancer doctor regarding mama's appointment for the pet scan results and she sent someone to the hospital room with the actual report. I could not make sense of the report so just put it aside until I could actually talk with the PA or the doctor. Mama was in the hospital for almost a week, getting fluids and antibiotics. 

I have a few health issues, one of which is loss of blood and iron which results in anemia. I've had to have several transfusions to bring my blood and iron into the safe zone.  I believe it's called AVM or something like that. The doctor I see who monitors my levels is with the cancer center and he shares the same PA, Suzanna, as my mother's doctor. I was getting my blood/iron levels checked and Suzanna gave me the results (which were okay) and then I started asking about my mother's pet scan results.  Bottom line was mama's cancer had returned and from the previous pet scan, which indicated the cancer had not spread, to the most recent one, the cancer had spread into her lymph nodes and throughout her body. Her doctor was recommending we start mama on home hospice. Of course mama, being Mama Elf, disagreed and "didn't need strangers" coming to see her. "Let the doctors think what they want to think".

Even with the diet for the diverticulitis Mama Elf started having pains again. She wanted to go to her PCP so I took her and took a copy of the pet scan results with us. The PCP told her he would have to run a battery of tests on her to determine if there was anything different going on but wanted to put her on another round of antibiotics to see if it helped before he put her through the discomfort of more tests.  So she was put on more antibiotics.  

Mama Elf's cancer doctor apparently understood her better than I thought.  After my discussion with Suzanna, the doctor had called in a mild medicine that helped her to calm down a bit and a couple of days after the visit with the PCP, Mama Elf told me that I really should get someone to come to the house to see her so I wouldn't have to take her to the doctors so much. Of course, all this was Mama Elf's idea. So I agreed and set her up for home hospice.


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## Suzy623 (Oct 10, 2019)

Not sure whether I try to block some things out or whether I just simply forget details. I would prefer to think that I can remember things but may, on occasion, not be able to pull the right file out of my rusty, bent, filing cabinet of a mind.  I believe it was sometime middle to late June. Hospice was coming to see my mother twice a week to keep an eye on her vitals and general health. They were a major help just by coming because it gave my mother someone to talk with other than Daddy Elf, my sister and me. 

Her nurse would usually come on Tuesdays and Fridays. On Mondays and Thursdays the wound care nurse would come out for my sister, re-dressing her wounds and keeping record how they reacted with different types of medications that were tried. This was two different hospice agencies because the hospice nurse for my sister specialized in wound care and the one for my mother specialized in geriatrics.  They were all nice and seemed to know their business because there were benefits for both my mother and my sister and, since they both saw some improvements with the nurses care, it seemed to pick up their spirits. And that's a large part of fighting an illness of any type.

As we got into July, I noticed a change in my sister. She just wasn't herself.  She would always wake up during the night, close to midnight or 1:00 in the morning and stay awake for a while. Her room was next to mine and I could hear her get up and let her dog out, maybe turn on her TV or get on her computer and then I'd doze back off. But she became erratic in the times she would get up during the night. Then she got to where she would call me and I'd go help her get to the bathroom or change her clothes because she lost control of her bladder. 

As the days went by I would have to go to her during the night to get her off the floor because her legs were weak and couldn't hold her up.  But she kept trying and pushing.  The 2nd week of July she could not bathe without help and could not get anywhere by walking.  He pain started getting worse and she was constantly laying in bed and running low grade temps.  We noticed that when she was sitting up she would lean forward and to the left, unable to hold herself up. Her left arm lost feeling and that's when we thought she had a stroke.  We called the ambulance and she was taken to the hospital.

When she got to the ER, knowing she was a cancer patient they put her in isolation, connected her with an IV and drew blood for tests until they could examine her further.  By lunch time she was put into a room on the 12th floor, which is the cancer floor at Providence Hospital. Late that night they moved her to the 5th floor, which is the Intensive Care Unit. She was put in a medical coma until more tests could be done and the doctors could be sure of just what they were dealing with. My sister had 4 (adult) children living in Mobile and 2 in Missouri and Minnesota. The 2 that were out of town were notified and made arrangements to come to Mobile to be with their mother and their siblings.


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## Suzy623 (Oct 11, 2019)

Meanwhile, back at the ranch...(can't recall which show that came from but just seemed to fit here).  The evening my sister was taken to the hospital, Mama Elf started getting sick. She was having the severe stomach pains again and running a mild temp. She refused to take any Tramadol for pain and all I was able to do was to get her to take tylenol and motrin every 2-3 hours to control the fever.

Whenever Mama Elf was sick or hurting, Daddy Elf had to get her to a doctor or hospital. And he was constantly saying why can't we take her to the doctor? We all know times have changed a lot in the medical field over the years. Daddy Elf doesn't understand that you just can't walk into a doctors office and see a doctor. You have to have an appointment made several days, weeks or months in advance to see a doctor. He could not understand. "Then we'll take her to another doctor. Why don't we just take her to the ER?" And, for those who are familiar with Alzheimer's, those questions were repeated over and over and yet still over again.

Since she is 89 years old, I thought it best to go ahead and take her to the ER. Of course I partly did it because of Daddy Elf.  I knew it was late (almost 2:00 am) and I knew Daddy Elf would have a hard time but I didn't know what else to do. When we got to the ER, the tests results showed she had diverticulitis, a UTI and, of course the cancer tumors in her stomach area. They put her on an IV and started giving her strong antibiotics as soon as they got her to a room on the 12th floor. 

Daddy Elf's sun-downers extended to sun-uppers and he was getting hard to manage. In the past he had always stayed in the hospital room with Mama the entire time she was there. Mama was sleeping peacefully, mostly due to the pain medicine I'm sure, but I had to check in on my sister and let my nieces know where we were. Daddy Elf promised he would stay right there with Mama so I rushed down to the 5th floor.

My sister, as I mentioned, was in a medical coma and there were instructions to not make any noise, not even talk to her or touch her. The doctors were trying to get the left side of her brain to go to sleep because she kept having seizures and they wanted no stimulation whatsoever.  They were getting to a fine line of potentially giving her too much medicine. After speaking with the doctor, the nurse, and my nieces, I headed back up to the 12th floor.  It was 8:30 or 9:00 in the morning. 

I finally told Daddy Elf that we were going home to get some sleep and the nurses would be checking in on mama through the night. I spoke with the nurse to make sure she had my cell and home number. She verified that they did and then told me I couldn't leave Daddy Elf there by himself again. He was wandering around the nurses station and got lost and couldn't recall who he was there with but said they needed to eat.

You've got to know my daddy.  He was raised in a family with 5 siblings and their mother insisted they eat 3 meals a day. He was raised with the motto: Feed a cold, feed a fever and feed a broken heart; everything else will take care of itself.  My brother and sister and I were also raised that way. So, Daddy Elf thought mama should eat breakfast.  I explained my situation to the nurse and, I had to agree with her about leaving Daddy there with no one to keep an eye on him. I was a paralegal for over 15 years. I could understand 'liability'. I knew I was going to get snippy so it was time to get Daddy Elf and me home.


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## Suzy623 (Oct 16, 2019)

Mama Elf was in the hospital for 3 days. Three long days for Mama Elf, Daddy Elf and me. But Mama Elf was feeling better so it was worth it. When we got her home, she laid down for a nap. She had been getting tired so easy. Daddy Elf was feeling better too and was able to take a nap. I woke them both up before dinner. They both ate well and went back to bed and slept all night. By the next morning you could see by looking at Daddy that everything was as it should be now.

My sister was still in ICU and still in a coma; whenever the doctors tried to back off the sedation she would start having seizures in the left side of her brain and they would have to increase the sedation.  Oddly, the large tumors she had on her arms and legs started looking much better and were slowly clearing up. At the end of the second week you couldn't even tell they had ever been there. Going into the third week of her coma she contracted MRSA and we had to 'suit up' when we went in to see her.  Her children spent turns staying at the hospital during the night, usually two at a time. But sometimes all 6 of them would be there with blankets and pillows and sleep on the floor in the waiting room, alternating out through the night sitting with their mother.

During the end of the third week of her coma the doctor called a meeting of all the kids and, as I had Power of Attorney, I was there also. The doctor said we needed to decide whether to continue as we had been or to put her in hospice. Although I had Power of Attorney, I made it clear to the kids that they would have to decide on what to do. We discussed it to great length with the doctor and all of them agreed to have her moved to hospice. 

When I got home I had to tell my parents that after losing their son 8 months ago, their youngest daughter was being moved to hospice. I had been keeping them updated on my sister's situation and had taken them to the hospital several times to see her when she was in ICU. But now it was longer "when" she came home but "if". It was a hard thing for them to accept as parents. It was a hard thing for me to accept as a sibling.

On the night of October 1, 2019, my sister's twin daughters were staying with her in her hospice room.  The others wanted to stay and sleep in the hospice 'community' room but there were so many people stretched out on the floor there that they couldn't even get into the room. They checked the floor above and below but weren't allowed to stay in their visiting rooms. So, the other 4 kids went home and let the twins stay. My niece called me early the next morning to tell me that my sister had passed away at 3:00 am. My mother happened to be awake so I passed the news onto her.  We decided not to wake Daddy Elf and to wait until he woke up later to tell him.

My sister's funeral was the following Monday. I only got through it by keeping a close eye and hand on Mama and Daddy Elf. As we were sitting in the chapel I remembered when we were at my brother's funeral a few months earlier.  My sister and I sat on each side of Mama and Daddy and we all held hands throughout the service. My sister was no longer with us now so I sat beside my mother and she and Daddy and I held hands through my sister's service. It was just so surreal. I wanted to jump up and run away from the pain on my parent's faces and from the pain in my heart.

I could more fully understand now why my sister did not want to die before our parents. The pain on their face and in their eyes was painful to see. I'm sure mine was too. Love and miss you sis.


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## hollydolly (Oct 17, 2019)

Oh My God, Suzy.. this is the most heartbreaking  story I've ever read, ..how have you managed to keep your sanity ?...

R.I.P your brother and much more recently your sister... ...and what a memory you have, absolutely incredible!!


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## Suzy623 (Oct 17, 2019)

hollydolly, although I started writing this diary so others would know me better, it has somehow evolved into a 'soul cleansing' for me I think. There are some things I've intentionally not written about because there is so much pain. As I'm writing this, I can hear my Daddy looking for something in his room.  Every night he's going through drawers and closets looking for something. I can't sort it out and can't think of anything he may have lost or could be looking for. And if I were to ask him he says he doesn't know. Situations like that just baffle me; I can't help him with what is evading him. It breaks my heart.  

My sanity? Don't know how I've held on. Or IF I've held on. Maybe Daddy Elf is looking for his sanity at night. I don't know anymore.


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## Suzy623 (Oct 17, 2019)

It's been almost 3 weeks since my sister's funeral. Her kids have adopted me as their 'stepmom'. Along with trying to settle her estate I realize I've inherited the problems of her kids. I really don't mind. They usually come over to talk or cry because they miss their mother or vent about a sibling or their work. It keeps me distracted and Daddy Elf enjoys it when my nieces and nephews come over. I remember as a child that Daddy Elf would make paper airplanes for my brother, my sister and me. And he's done that over the years for his grandchildren and great grandchildren and great-great grandchildren. By the time the great grandchildren came along, Daddy Elf was making gliders out of the foam trays from the grocery store and the foam egg cartons when they came out. Oddly, he still sometimes remembers how to make the airplanes and the little ones love to go outside with him so he can watch them fly their planes. 

There have been so many times I would think "I've got to tell my sister this" and then is when it hits me that she's gone. She and I spent a large part of the day talking about things. My problems, her problems, her cancer, Mama Elf's cancer, Daddy Elf's Alzheimer's. Times when I just needed to get away for a while she would wait until I got back to take her morphine so she would be more alert to be there for Mama and Daddy. When she and I both needed a break, our brother would pick Mama and Daddy up and take them to his house for the day. He lived about an hour away and Mama and Daddy enjoyed the outing as much as my sister and I enjoyed our break.

For a few years Mama has had panic attacks when she couldn't breathe, even with her oxygen. She had advanced COPD and used a concentrator to breathe at night. The attacks came more often and Daddy Elf and I would be up during the night trying to calm her down. Me with damp, cold washcloths, a bottle of ice water and a fan blowing into her face.  Daddy Elf was there to hold her hand, wrap a blanket around her (he insisted she was cold because he was cold) and wanting to take her to the doctor. The hospice nurse prescribed ativan for these attacks to calm her down. She handled the panic attacks much better when she would take the ativan. 

About 3 weeks after my sister's funeral, Mama became even more forgetful and had a harder time talking. She would get very frustrated at herself. It would get almost funny listening to a conversation between Mama Elf and Daddy Elf. Mama Elf was also very hard of hearing and Daddy Elf wasn't, so Mama Elf would talk louder (she said Daddy was losing his hearing) and Daddy would talk soft because he never raised his voice, so Mama Elf thought he couldn't hear. And Mama Elf couldn't understand that you could only tell Daddy Elf to do one thing at a time or he would get confused. So, Mama Elf would yell at Daddy Elf to go to the bedroom and get her glasses off the dresser by the TV. Well, Daddy Elf was confused and lost before he left Mama Elf's sight. He would take her the hairbrush or the TV remote or whatever he could find in their room that might be what she wanted. Remember, under Mama Elf's white hair, she has red roots. So she would yell louder, thinking he wasn't able to hear her, but aggravation was in the tone of her voice. That's usually when I would hear what was going on and would help Daddy Elf get Mama Elf's glasses or whatever she wanted him to get.

Mama Elf refused to take the Tramadol. She wouldn't take any pain medicine. The reason she wouldn't take anything for pain actually made sense from her perspective.  Years ago Mama had a major surgery procedure and was given morphine for pain. As she was waking up from the anesthesia, she started asking about the 'little green men' in her room and didn't want us to leave her alone with them. Of course, there were no 'little green men'. But she swore there was. She was hallucinating under the morphine. The doctor lowered the dose and eventually took her off the morphine. Tylenol 3 worked for her pain and we never let her have morphine again.  

About 5 years ago Mama had another procedure and we made it clear that the doctor not give her morphine.  She seemed to be doing well so my sister and I went home for the night and Daddy, of course, stayed in the hospital with Mama for the night.  The next morning, around 6:00, I got a call from Mama. "Get down here quick. They will take my phone away again" and then, click, she hung up. My sister and I rushed to the hospital. Mama Elf was frantic. She said they wouldn't let her call us and took her phone away, they kept coming in and giving her shots to try to put her to sleep but she fought them. She also said they tied Daddy down and he couldn't help her. The nurse came in and I asked her about it. She said Mama had slept well, they had come in early that morning to take some blood and give her medicine. She became agitated and started screaming at them to call her daughters. The nurse gave her the phone and dialed the number for her and Mama put the phone to her ear upside down and couldn't hear anything so then accused the nurse of cutting her phone off.  Then Mama Elf started in on us, accusing us of locking her away in a home to get rid of her. Daddy Elf was just standing there shaking his head and looking confused. He didn't know what to do. I saw the doctor at the nurses station and went to ask him if Mama could get up and move around a little. He ordered a wheelchair for her, we put her in the wheelchair and pushed her down the hall so she could see we were at the Providence Hospital. She didn't believe us. We pointed toward the airport and told her our house was on the other side of the airport. She calmed down finally. My sister and Daddy took Mama back to her room and I went in search of the doctor. I spoke with the doctor and he assured me she wasn't taking morphine. I asked if it was another opiate and he said it was Norco. I told him how she was acting and that he needed to get her off the Norco. Within a few hours Mama was herself again but, to this day, refuses to take pain medications. Needless to say, we do not encourage her if she refuses.


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## Suzy623 (Oct 18, 2019)

It was about 5 weeks after my sister died that I realized how hard I pressed myself to keep humour around us and to keep our spirits up as much as I could.  Remember "Pollyanna"?  Throughout the years I've put my 'Pollyanna hat' on when things got stressful or bad.  And over the last few years I had to put it on more and more often. Being able to keep a smile on everyone's face was important to me.  I knew if I could keep a smile on their face that there was spirit and hope inside them. And seeing their smiles gave me hope and helped my spirits. 

Since I was a child, and for as long as I remember, when it came to meals at home we always sat at the dinner table together and ate. We ate what was put in front of us and we finished what was put on our plate. We always ate at the table, too. Never at the sofa or in our room. We sat as a family and ate together. My parents built this house in 1965, I think I was about 12, my brother 13, and my sister 7 years old. It still has the original flooring, doors, etc., and still has a few pieces of the furniture that was first put in the house. The kitchen table sits six and we each had our own 'place' at the table. After we all got married and moved away from home, when we would come to visit we each still would sit at our 'place' at the table. Odd, those little 'traditions' you don't notice until years later.

There were times when my sister couldn't eat certain foods while she was having chemo and, a month before she died she could rarely eat anything. Even so, every night I tried to cook something for dinner that everyone would like and could eat. Sometimes that would just be a bowl of applesauce for my sister. But I would set the table with a place setting for her even though I usually would take her food to her and feed it to her. Now I was cooking for just the three of us and it seemed that nothing tasted good to me. I noticed that Daddy Elf and Mama Elf weren't eating much either so I determined it was because there were two empty seats at the table. My brother's and my sister's.

And I had lost my Pollyanna hat.


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## Suzy623 (Oct 19, 2019)

Daddy Elf, Mama Elf and I had gone to the cemetery several times to visit my brother's and sister's grave. Mama Elf was the type who liked to visit cemeteries.  Me, not so much. Nor could I understand why someone would. Over the years she and Daddy would take trips and Mama always went to the nearby cemeteries if it was a city (or was near a city) where we had once had relatives.  

You know these huge rubbery tubs with lids that you buy from Walmart?  She had 6 full huge tubs of pictures. And several smaller ones with albums and books and newspaper articles. She would have the pictures spread over every flat space in the den. I finally bought her a 6 foot fold out table she could set up so she could go through her pictures when she felt like it. She would be content doing that for a week or so and then she would just leave them spread out and after another week I would pack them all back up and put the boxes back in the spare room for next time.

When she was going through her pictures she was reliving some of her past as well as keeping her mind sharp. She got so she went through her pictures at least once a month. I got so I would just push and stack the tubs in the den rather than pulling them down the hall every 2-3 weeks. 

Mama was the matriarch of our family. She had her special chair at the kitchen table and spent a major part of the day sitting at the table where she could be involved in everything that happened. She could see through the bar in the kitchen who was coming in the side door. She could see through into the living room to see who was coming in the front door and had a large mirror on the wall across from her chair where she could see who was coming in the back door. She was always in the middle of everything. When she wasn't going through her pictures. 

Seven weeks since my sister died. Mama Elf was feeling worse and would sleep a large part of the day and eating less. The only times she would be sure to be up was when the hospice nurse was coming by and then she would take a nap as soon as he left. She had a mild fever when the nurse came by one day but we didn't think it was something to be worried about. It would go back to normal when I would give her Tylenol. The next morning she was in pain and was running a fever. I gave her Tylenol and the fever didn't go down so I gave her Motrin two hours later. The fever still didn't go down and was actually going up.  Within a few hours it was up to 103.9 and she was getting unmanageable. She kept trying to get up out of bed and would fight me and Daddy to the point where we had to hold her down on the bed. Nurse said he would be over as soon as he could but to give her an ativan to try to quieten her down. Thirty minutes later she was still fighting us to get out of bed. Of course, Daddy Elf wanted to take her to the doctor or the hospital and he was getting adamant about it. 

I called an ambulance to take Mama Elf to the hospital. The hospice nurse arrived as the ambulance pulled up and he said he would call the hospital to let them know she was coming and give them her medical background.


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## Suzy623 (Nov 2, 2019)

The entries were beginning to bother me so I had to stop for a bit. But it continues,

Daddy and I were waiting in the waiting room at the ER so triage could finish their thing and take us to her room in the ER. We were waiting on the test results but they had given Mama something for pain (no Norco or Morphine!) and she was resting. They had her hooked to an IV and were giving her fluids. When the test results came back, they showed she had a UTI infection and had diverticulitis again. But she also had sepsis and her kidneys weren't working. And, of course, she also had the lymphoma which had gotten worse and added more pain to her stomach.  

They put mama on strong antibiotics and were monitoring her kidney output. Daddy and I stayed with her and occasionally she would wake up and talk but was for the most part was pretty groggy. The doctor came in and said they were going to move her to ICU to keep a closer watch on her. Their big concern was, of course, the kidneys and the sepsis.  As the nurse pushed mama's bed to the ICU unit, Daddy walked alongside it holding Mama's hand. It was a little past 8:00 p.m. and Daddy hadn't eaten since lunch and I noticed him stumbling as he walked. 

When they got Mama settled in ICU, I called my BIL. He got off work at 10:00 that night but would come to the hospital and stay with Mama so Daddy could go home and get something to eat and maybe sleep.

In ICU they have rules that between 6:00 and 8:00, a.m. and p.m., no visitors or family allowed.   The next morning I let Daddy sleep as long as he would and when he got up he was agitated and kept pacing, sitting, pacing. Then he asked if we could go get Mama out of jail. He wanted to know if I knew what it would cost.  I explained to him that she wasn't in jail, she was in the hospital. The relief on his face was visible. I told him that as soon as we got ready we would go to the hospital, so he went to change. When he came out of the bedroom, he asked how far away the jail was and how long would it take to get there.  I told him Mama wasn't at the jail, she was in the hospital. He asked what town it was in and how long it would take to get there, how long would we be there and what did he need to pack. When I told him it would take about 15 minutes to get there he was shocked. He then asked why weren't we leaving. I took a deep breath, took control of myself and said, "We are leaving right now".  Some days you've go to just roll with the flow.  

When we got to the hospital, the nurse told me they had to turn on the alarm on her bed because she kept trying to get up throughout the night. They had also given her ativan so she was calm for now. Her kidneys still weren't working and they started her on the strongest antibiotic they could because of the sepsis.

Mama was dozing a lot but would wake up enough to talk with us and ask how things were at home.  I told her that Bella slept in her room last night and that brought a little smile.  Bella was my sister's dog and never left my sister's side when she was sick. Bella had been in Daddy and Mama's room several times that week when Mama was taking a nap. Bella would just lay on the floor at the foot of Mama's bed until Mama got up and then she would leave the room. I think it concerned me a little when I noticed Bella doing that. Dogs have a way of sensing things. I've seen it several times over the many years I've owned dogs. And my sister and I had made it clear to our dogs that they were not allowed in "Grandma" and "Grandaddy"'s room.  We felt it would be dangerous if Daddy or Mama got up during the night and tripped over a dog laying on the floor. But Bella seemed so insistent to be in the room with Mama that I stopped telling her to get out and she would always leave the room as soon as Mama woke up. Maybe I'm reading too much into it. And it was a feeling on my part, probably because I knew how close my sister was to Bella.

The conversation I had with Mama later that day brought more concern though. My BIL had taken Daddy out to get some lunch. Mama had come out of the ativan fog and was talking. She told me her daddy had come to see her, that he had come in with someone but she couldn't see who was with him well enough to know who it was. My grandpa had died over 55 years ago. I know...I know. You've heard the old wives tales too I'm sure. But then I think of how Bella has been acting.  And then I remind myself of the stress all of us have been under for the last 10 months.  So I reacted as any reasonable person in that situation, I pushed it to the back of my mind, among all the cobwebs of things I didn't want to think about.


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## Suzy623 (Nov 3, 2019)

The next day we again went to ICU and Mama seemed to be groggy but was coming out of the medicine. Daddy would stand beside the bed, holding Mama's hand and she would open her eyes and smile up at him then doze off again.  Trying to get Daddy to sit in a chair beside the bed was impossible.  He said Mama wasn't comfortable when he sat down beside her, that she wanted him to be where she could look up and see him. 

It was shortly after lunch and I was going to the hospital cafeteria to get some lunch for Daddy and me.  He assured me he would be fine and that he would stay there with mama.

When I came back into the room with our lunch, Daddy gave me this look like he was so happy to see me. He said Mama had been trying to get out of bed and he didn't know if he could hold her off much longer. I walked up to the bed and asked Mama if she had been giving Daddy a hard time again.  She gave me the sweetest, and yet the most guilty looking smile that I had ever seen.  Even Daddy had to laugh. 

The doctor came through later that afternoon.  He said her kidneys were almost completely shut down and they were having no results with the antibiotics for the sepsis. And her vitals were becoming very unstable.  He said we had to make a decision.  Daddy said that he just didn't want Mama to be in pain. I agreed with that but I also knew that Daddy didn't need to see her in pain. He and I discussed the options and decided the best thing we could do for her was to have her moved to hospice. 

It was almost 6:00 when they came in to move Mama into hospice. Daddy and I went home to eat dinner and were back at the hospital shortly after 8:00 p.m. We went to the 11th floor this time, to the hospice care unit.  

_Deja vu _all over again. The nurse told me she had put Mama in a room in a different wing than my sister was in. She and the other nurses remembered us being there when my sister was in hospice two months earlier, and they were trying to do what they could to make any of it easier for us. Of course, we all knew it was impossible to make it easier.  

When we went into the room, Daddy went to the bed and took Mama's hand and kissed it. He said it wasn't fair. All I could do was hold him. 

We stayed there with Mama until around 10:00 when my brother-in-law came in.  He would stay with Mama while I took Daddy home and we would be back at the hospital the next morning.


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## Suzy623 (Nov 29, 2019)

The next morning when Daddy and I got to the hospice room, Mama was sleeping, her breathing was very irregular. Daddy went to stand beside her bed and held her hand. He asked me if she would be able to go back home with us. I told him it was up to God. If God wanted her he would take her with Him. If He wanted her to go home with us then she would go home with us. That we just had to wait to see what He decided. Daddy nodded his head and kept holding Mama's hand.

Later that day, Mama's breathing became raspy and labored and Daddy was trying to put another pillow under Mama's head. She was sliding a bit to her left. I told him to let's have the nurse come do it. I called the nurse in and she propped Mama up a little better and listened to her lungs. Daddy had stepped over to the window. The nurse told me it wouldn't be long, just a few minutes, that Mama was going through the transitioning stage. I walked toward Daddy and took him by the hand. "Daddy, Mama needs you with her", and I walked him toward the bed. He took Mama's hand and told her he loved her. A few seconds later the nurse called the time. I stood there with Daddy, holding him tight, and he sat down and started stroking Mama's head.

My nephew came into the room to visit Mama and realized his grandmother had just died. We all just stood there, holding hands for several minutes. Then my niece came in and joined us. Finally I told Daddy that we needed to go so the nurses could start cleaning her up. He didn't want to go. He didn't want to leave her alone.

The nurses came in soon afterward and I told Daddy that the nurses were there so Mama won't be alone. We were both quiet on the way home. When we got home it hit me how quiet the house was, and I know Daddy was thinking the same thing. Neither of us had eaten lunch so I just scrambled some eggs and made us sandwiches. Daddy went to his room to lie down. I don't recall what I did.

That evening I think I was still in a state of shock or just numb. Daddy asked where Mama was and I told him she was at the hospital and they would be moving her to the funeral home in the morning.  He asked if we could go see her the next morning and I explained that they wouldn't let us see her until the funeral. He was numb, like me, so we didn't have much to talk about that evening. We were both in our own state of mourning.  

The next morning I went to the funeral home and completed the arrangements. It was Friday and the funeral was scheduled for Tuesday. There were so many times over the next few days when I would think of Mama and how she would want things and what she might want for Daddy. And the numbness was always there, weighing me down constantly. So many decisions to be made; so many phone calls to make; so many things to do. 

Daddy would ask me several times a day where Mama was and I'd tell him she was at the funeral home and we could see her at her funeral on Tuesday. I kept telling myself to focus on Daddy and keep him as comfortable as possible but I was worried that he would have a hard time Tuesday. 

I remember the way the funerals were done not too many years back. The wake was the evening before the service, and after the funeral everyone would get together at the immediate family's house, taking casseroles, chicken, side dishes, desserts, etc. Always tons of food. So everyone would be together afterward and it would help ease some of the pain and heartbreak of losing a loved one, if only for an afternoon. Would Daddy be up to that? Would I be up to that? This funeral was so much more painful, almost unbearably so, from any I had ever attended. Losing my brother, then my sister, and now my Mother. And Daddy. Losing his only son, his youngest daughter and his wife in such a short space of time. I did not know what to anticipate or expect.

On Tuesday, Daddy and I went to the funeral home. At the end of the visitation, he walked up to see her one last time and told her again that he loved her. I had given him a single white rose to give her and he laid it gently beside her and then we walked across the hall to the chapel.

This time it was just Daddy and me holding hands during the service. Just the two of us left, sitting in a chapel full of people. When we were walking to the gravesite, Daddy and I were holding each other up. We both had to be strong for each other.


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## Suzy623 (Dec 15, 2020)

November 2019. Week until Thanksgiving. I was going back and forth about what to do for Thanksgiving. It was almost 4 months since my sister died and 2 months since my mother died. Would Daddy feel better if it was similar to the previous years or would he feel better if I did something different? He was still asking me where mama was but it was becoming fewer and further between.  He would call me by my sister's name sometimes but I obviously knew he was talking to me. He never mentioned my brother.

I decided to make a small Thanksgiving dinner for the two of us, my BIL and my nephew and invited the rest of the family over for dessert and coffee that evening.  It worked out okay, except I had a hard time keeping my attention on cooking. My thoughts went to the carrot cake mama used to make. I would grate the carrots while she prepared the cake batter. When the grating was finished, I passed the carrots to mama while she finished the batter and put the cake in the oven. Mama began making the lemon icebox pies and I would begin making the banana pudding. 

My sister loved banana pudding. One year I scorched the custard and had to start all over. But I made a small banana pudding with the scorched custard first. The second custard came out as it should so I made a large banana pudding. After dinner I dished up a large helping of the scorched banana pudding and gave it to my sister. The look on her face when she put the first spoonful in her mouth! She went ballistic! She was in her late 20's. Have you witnessed an adult throwing a temper tantrum? It's not a pretty sight. I was finally able to convince her that I had another perfectly good pudding in the kitchen and she calmed down. But she had her husband taste the pudding before she would eat it. That would become one of the stories that would be told at every holiday meal but it took a few years before my sister found the humor in it.

The dinner worked out well that Thanksgiving and Daddy was able to eat better with fewer people at the table. When there are too many people around he gets very confused and will eventually leave the room and go to a quieter place in the house. I was relieved when the day was over.


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## Suzy623 (Oct 12, 2021)

2020. Daddy and I had to reschedule several doctor appointments in 2019 so my New Year's resolution was to get us back on track. 

I took Daddy for his appointments first then I started scheduling mine. I was able to see my cardiologist who set me up to have a heart Stent in April, after I had an iron infusion. Then Covid hit. My heart Stent had to be put on the back burner because I was considered high risk.

I was able to get the iron infusion but I would usually get a blood infusion when my iron got as low as it was then because the iron was needed to build up more red blood cells but the blood banks were already running low and my blood type is 0-negative. But at least I got the iron and was instructed to get my blood checked again in 2 months. The game plan was to get another iron infusion along with the blood infusion at that time. We were working under the assumption that Covid would run its course by then. 

I've yet to get my blood tested. 

Daddy's alzheimers has progressively gotten worse and it's really been tough on him and on me. Anyone who has cared for someone with alzheimers can vouch for the challenges involved. Daddy no longer has control of his bladder or his bowels and will not wear diapers so I'm constantly cleaning his bedroom and bathroom and the laundry is a nightmare.  Thursday night he started passing out and fortunately didn't fall but passed out in his chair. His blood pressure had dropped and his pulse was real week. The ambulance took him to the ER. 

Daddy has a UTI which at his age can be very hard to manage. He will be 91 in December. The doctor thinks he may have had a couple of small strokes as well. I'm spoon feeding him now and he has a physical therapist working with him 2-3 times a day to get him so he can walk with a walker. 

They have put him on inpatient hospice and hopefully he'll be able to come home in a few days. He will have home hospice when he gets out of the hospital.


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