# I don't know what Advice to give to my Sister



## Sassycakes (Apr 16, 2019)

My heart is breaking for my older sister and her son my nephew. 13 years ago my nephew due to a misdiagnoses had an epidural stroke that left him paralyzed from the chest down. My Sister's husband had passed away a few years earlier, so she had to quit her job and started taking care of her son. His wife walked away and got a divorce as soon as he had the stroke. So for the last 13yrs my sister has been taking care of her son. About a week ago he was going outside and his wheelchair fell off the ramp leaving the house. He was rushed to the hospital and has been in there over a week. Today they told my Sister that he has serious infections in his blood. They also found nodules in his lungs. The infection is so bad that nothing they have been using to treat it is working. After many tests they told my sister that he is in Terminal condition and doesn't have much longer to live.She has 2 choices to pick from. One they think it would be best if he went to Hospice. Since she is 75yrs old now they feel it was the best choice. The other choice would be to have Hospice workers go to her house for some hours everyday. Of course when Hospice isn't there she would have to give him whatever care he needed. My Sister isn't in the best of shape due to her own health problems. She doesn't even weigh 100lbs. She has been neglecting herself for the last year and put off many of her own Doctors appointments. I want my nephew to go to hospice. I am soo afraid of what she might see if he is home and I believe his care would be better in hospice then having hospice at home.I know she wants him home and I understand that,but I don't think that's a good choice for either of them. I don't know how to convince her,or if I am even right. What are your thoughts.


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## Aunt Bea (Apr 16, 2019)

Hospice seems like the best option but I'm not sure that I would offer an opinion unless she asked.

IMO she probably knows that hospice is the best choice and will eventually make the right decision.

The important thing is to be there for her and support her in whatever decision she makes.

Good luck and best wishes to you and your family.


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## SeaBreeze (Apr 16, 2019)

What sad news, I feel so bad for your sister and her son.  I agree that the best thing for both of them is for him to go to Hospice, but if that happens, will he be close enough to her to visit him almost every day if she chooses?  I agree with Bea, she need complete support and advice in making this heartbreaking decision.  Thinking of you all and wishing for the best.


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## Gary O' (Apr 16, 2019)

My wife did hospice work for a few years 
Institutional and in home

In home hospice was so much more convenient for all folks involved
And seemed very nice for the patient 

Maybe a harder look?


very tough decision


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## Keesha (Apr 16, 2019)

Sorry you are dealing with this. That’s tough for your sister to go through. 
I’m sure she’ll make the right decision. Wishing you the best.


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## jujube (Apr 16, 2019)

What a hard choice she has to make!  The head says hospice in a facility.  The heart says hospice at home.  

Just be there for her and support her choice.  You're a good sister.


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## Sassycakes (Apr 16, 2019)

Gary O' said:


> My wife did hospice work for a few years
> Institutional and in home
> 
> In home hospice was so much more convenient for all folks involved
> ...



Thank you Gary. Do you know how many hours a day they stay at the house. My sister didn't know when I was talking to her.


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## Gary O' (Apr 16, 2019)

Sassycakes said:


> Thank you Gary. Do you know how many hours a day they stay at the house. My sister didn't know when I was talking to her.



24/7

they had to

not sure about now

worth checking, I'd think


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## treeguy64 (Apr 16, 2019)

You're certainly right: Hospice, at its location. Your sister thinks otherwise, though, so you'll just have to let her make her own decision, here.  If it destroys her, that's her choice to make.  Best to stay out of it, unless you're asked for your opinion.  Life can be cruel, at times.  This is one of those times, unfortunately.


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## win231 (Apr 16, 2019)

If a hospice careperson can stay in the house 24/7, that would be OK.  Otherwise, explain to her that hospice care includes sufficient pain control to prevent a patient's unnecessary suffering.


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## Catlady (Apr 16, 2019)

Hospice at home is best for him (home is more comforting), and if she can have lots of help, that will be good for her too, no daily trips to hospice.  But, let her make her own decision.  Does the decision have to be made NOW and no changes allowed later on?


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## terry123 (Apr 16, 2019)

jujube said:


> What a hard choice she has to make!  The head says hospice in a facility.  The heart says hospice at home.  My thoughts exactly.  I have seen both. Probably best for her would be facility so she can take better care of herself.  Hard decisions!
> 
> Just be there for her and support her choice.  You're a good sister.


  Yes you are.


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## Butterfly (Apr 17, 2019)

My niece's son tried to do hospice at home for her when she was dying, but it was just too much for his family to manage.  Hospice checked in once a day, but they did not stay all the time.  None of them do that here.  

I think it would make a difference to know what hospice at home looks like in the state he lives in.  Is your sister able to handle things like toileting, etc., when hospice nurses are not there?  Is she able to change  his bed linens if he soils them? Is she able to manage him if he became combative (my niece, much to our surprise, did).  I took care of my mother at home when she was dying.  I was only 35 and pretty strong, and  it was almost impossible for me to do and it was a truly awful experience and was pretty much a 24/7 job.   I most definitely would not attempt it now, and I am 73 and in good health, except for some arthritis.  If your sister lives alone except for her son, it could get downright dangerous.  There is also the terrible emotional toll it would probably take on your sister. Death isn't always the gentle experience we see in the movies where the person just lies there quietly in bed and drifts away. 

I would think that especially considering your sister's age, it would be a much better solution for him to enter hospice at a facility.


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## 911 (Apr 17, 2019)

Did your sister discuss this with her son? Maybe he would prefer the 24/7 care that Hospice would provide being at Hospice. 

If Hospice does in home 24/7, then that may be the better choice.

My uncle died just a few years ago from prostate cancer and he had in-home Hospice for his final 5 weeks.


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## Sassycakes (Apr 17, 2019)

Thank all of you for your encouraging words. Hospice at home only stays for a few hours a day. My nephew is not coherent enough to say what he prefers. My sisters daughter ,my niece told my sister she would like them to move in with her so she would be there to do anything her brother needs when Hospice isn't there.If my sister doesn't want to do that then my niece said she would go to my sisters house every night to be with them.I said I would go at night and sleep there to help my sister also. The Doctor said he doubts my nephew has more than 3 months left if even that much time. I am at a lose for words. My heart is breaking for all my poor nephew has been going through. Since their Dad passed away my husband has been like a 2nd Dad to them and he is willing to do whatever I wish to do.


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## CeeCee (Apr 17, 2019)

I had hospice for my husband.  It was doable...he was bedridden and had a colostomy, ileostomy and a tube and bag from each kidney...forget what those were called but think it started with N...anyway they had to be changed...hospice would do it if they were there, if not I did it...not hard.

I also learned how to change a sheet on a bed while the person is still in it...also not hard.  Of course I was only 53 at the time and no back problems like now.

I can’t remember how often Hospice came out but it seemed like someone was coming every day for something.

Beside the nurses, there was a lady that came and cleaned once a week for me...someone came to give him sponge baths and on occasion even a dr from hospice would come out.

All his meds were delivered to the house and every Friday I was called and asked if he had all his pain meds etc..think on weekends they didn’t come.

There was also a  volunteer that came and sat with my husband for 3 hrs so I could just get out of the house once a week to do what I wanted.

Stores were close to me so I could always run out for food but I made sure the phone was by his side along with anything he could need for a half hour.

They gave him 6 months but he lasted 6 weeks on hospice...he died at home but I would say that was the worst...it wasn’t as peaceful as I would have liked.

my one bad memory...the rest of hospice is positive.


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## hollydolly (Apr 17, 2019)

Oh Sassy, this is beyond heartbreaking and Tragic for you all as a Family.. I have no words!! I'm so sorry !!


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## SeaBreeze (Apr 17, 2019)

My sister had hospice at home for her husband, I think they only came in for a limited amount of time daily to do what was needed for him, he was dying of cancer.  She was younger though, and had help from her daughter and her family, so it wasn't as difficult for her as it would be for your sister Sassy.  I'm glad that you and other family members have offered their assistance to make things work for your sister and her son.  I know it must be very upsetting for all involved...hugs.


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## C'est Moi (Apr 17, 2019)

I don't know what would be best, Sassy.   It's wonderful that your sister has you and other family that are willing to pitch in and help her through this terrible time.   Blessings to your family.


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## Sassycakes (Apr 17, 2019)

My sister finally met with the Home Hospice people. They spend most of the day there and do a lot. A doctor even comes to the house. They even will do the laundry and prepare some food for my nephew. My Sister has been caring for him over 13 yrs now since he became paralyzed. She was able to do everything but she is 75 now so she needs help. I just spoke to her and she has agreed to having hospice at home. As far as when Hospice isn't there at bedtime the rest of the family will take turns sleeping at my Sisters house. Thank all of you for your help.


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## RadishRose (Apr 17, 2019)

I'm so sorry for your nephew.

The plan sounds workable, Sassy. Your sister will handle things with hospice the way she wanted to and she has a strong and loving family to support her and her son during the night. 

La Famiglia!


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## SeaBreeze (Apr 17, 2019)

I'm glad your family will help her make hospice at home possible, that sounds very good for her and her son, happy it worked out.


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## terry123 (Apr 17, 2019)

SeaBreeze said:


> I'm glad your family will help her make hospice at home possible, that sounds very good for her and her son, happy it worked out.


Glad y'all have a solution that will work for you.  Sending blessings and prayers to you and your family.


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## Sassycakes (May 26, 2019)

My Nephew finally said it was ok for me and my Husband to visit him. He wouldn't let us go over to see him before because he knew how hard it would be on us. He is in Hospice at home and my sister cares for him most of the time. Hospice workers come a few hours most days. My nephew considers me and my husband second parents to him. After my sisters husband passed away 22yrs ago my husband stepped up as a 2nd Dad.When I went yesterday my heart broke. My Husband spent time alone with him and we had to take my husband out of the room because he was crying. After we got home my husband and I cried all night. According to one of the nurses she believes he has only about 2 weeks left.
 My sister looks so exhausted and thin. I didn't even remember until this morning that today is my sister's 76th birthday.


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## RadishRose (May 26, 2019)

Sassy, I wish for your sister on her birthday, that she have a day of rest and to feel some relaxation. May she enjoy extra hugs and attention from her family. God bless her and all of you.


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## AZ Jim (May 26, 2019)

God bless your poor sister and nephew.  Hospice will make things easier.


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## fancicoffee13 (Jun 3, 2019)

Hospice outside of the home for the nephew sounds like a good idea.  And it would take a lot of the stress off of her.  It might let her own health get better.


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## Repondering (Jun 6, 2019)

This is an oldish thread Sassycakes and your family's difficult journey is probably nearing the time of your nephew's exit from this world.    As I read the story I was deeply moved as it paralleled the story that I myself recently lived:  18 yrs after dad died I lived with Mom; 3 yrs after she fell and broke her back I was her 24/7 nurse; for 56 days after she fell again and broke another vertebrae she was in hospice care.....in hospital and skilled nursing home....I sat with her every day up to the very last moment, almost 5 months ago now.  I was the only family she had.
I think your family demonstrates great merit in sharing the tasks of caring for the young man.  My thoughts are with you all, people whom I do not know, as you are traversing this difficult path, now and also in the days, weeks, months and years to come as you remember your nephew's life and also recall the experiences you all lived through as you attended his departure from this world.


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## Sassycakes (Jun 6, 2019)

Thank all of you for your wonderful replies. I saw my nephew yesterday and it breaks my heart to see him in so much pain. He is on pain killers but they really don't help a lot. I pray he doesn't have to be in pain any longer as hard as losing him will be. I believe in God and Heaven and hopefully he will get peace soon.


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## Liberty (Jun 6, 2019)

Sassycakes... may God bless you, your nephew and your sister.  My heart goes out to all of you and commend you on the loyal loving care, prayer and attention you have faithfully given him during his time of trial.


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