# Difficult situation with elderly in-laws living out of state and dealing with their dementia



## Bobw235

My wife's parents (both in their 80s) live in FL and have steadfastly refused our attempts to get them to move back to the Northeast so that we can look after them more closely. They have round the clock in-home health aids looking after them.  My father-in-law has Alzheimer's (mid stage and rapidly declining) and his wife has recently been exhibiting serious, disturbing behaviour (paranoid, confused, delusional, talking about suicide, etc.).  My mother-in-law has been prescribed meds by a psychiatrist to get her to a more calm state, but thus far we're not seeing much of a change based on frequent phone calls and talks with the home health aid.  Caring for them from afar is no longer an option it would seem.  Neither my wife nor her sister have guardianship, nor do they have first tier power of attorney.  My wife, who just retired, (while I'm right behind her) is naturally very concerned about how to handle the situation along with her sister.  We believe that we have to get them up to our location and must do so soon.  The task seems overwhelming, as we're dealing with folks who can't be reasoned with at this point (we've been trying for years without success).  

I'd be grateful to hear from others in terms of how best to start dealing with the situation, resources, etc.  Additionally, if some on here have been in the situation where they found themselves having to move closer to family, what made it easier or less painful to deal with?  

I know this is a really heavy topic; I feel like I'm out of my league here.

Bob


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## AZ Jim

Sounds like it would be easier for you to move to them than expecting them to move toward you.  I can offer only my sympathy as I have no idea about the legal aspects of it.


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## Bobw235

Yes, that would be easier, but will never happen for a number of reasons, not the least of which is my wife and I dislike FL heat, humidity, politics, etc.


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## AZ Jim

I'm sure there are things the older folks don't like about Mass.  Good Luck.


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## Josiah

Bob,

This is a very difficult situation although far more common than many people might think. Are your wife and her sister the only children? I gather your in-laws have signed no power of attorney document. I think what will have to happen is for your wife or her sister to be appointed legal guardians. I would imagine the jurisdiction where your in-laws life would be anxious that this be accomplished because having a responsible party is much better than not having one. You will need the cooperation of your in-laws doctor and obviously you will need a lawyer to help you in this matter. What really makes situations like this horribly difficult is when another family member disputes what you're trying to do. You might also consider putting your in-laws in a nursing home near their home in Florida. By all means consult with the Alzheimer's Association. Let us know how things work out.


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## SeaBreeze

I agree with Jim, it would be easier for you to move close to them, but I understand your not wanting to do that.  However, it's impossible to force them to move somewhere they choose not to live. 

 I feel for you, it's definitely a difficult situation.  The good thing is they have round the clock health aids, that's probably the most you can ask for as I see it.  I also wish you good luck in dealing with this, and I wish the best for them.  We were lucky, when my husband's parents became so sickly they could no longer care for themselves, they were close by and we were able to open our home to both of them, and care for them in their last years.


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## Bobw235

Appreciate the advice here.  My wife and her sister are the only children involved.  I will consult with the Alzheimer's Association for sure.  My wife has also just learned of an organization called Circle of Life Partners.  (http://circleoflifepartners.org/) which we'll be looking at as another resource.  I think getting the cooperation from my in-laws' doctor is likely and a lawyer in FL and probably here in MA will be necessary.


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## Bobw235

I'm one of those "older folks" who don't like MA either.  Way too cold and can't deal with the snow anymore.  Can't wait to leave here, but that's a problem for another day.


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## Josiah

Bobw235 said:


> I'm one of those "older folks" who don't like MA either.  Way too cold and can't deal with the snow anymore.  Can't wait to leave here, but that's a problem for another day.



We've heard stories about last winter in New England.


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## Bobw235

One of the worst I have ever experienced.  Pulled more snow off my roof than I care to remember.  Good exercise though.


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## RadishRose

Hi Bob,

I'm your neighbor in CT and yes it WAS a brutal winter. I don't think your in laws could take that in their advanced age now. 

Wouldn't it be nice if you could all move to a middle-place?  Otherwise, I wish you success in caring for them long distance. I agree that since they have around the clock health aides it may not be such a bad situation.


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## Bobw235

RadishRose said:


> Hi Bob,
> Wouldn't it be nice if you could all move to a middle-place?  Otherwise, I wish you success in caring for them long distance. I agree that since they have around the clock health aides it may not be such a bad situation.



I think what makes this more difficult is seeing how quickly my mother-in-law has gone from a state of confusion, to truly worrisome mental health issues.  Just getting her to agree to go to see a doctor is difficult because she wants to be left alone.  My wife heard her mother screaming and cursing in the background the other day when she called.  Then her mother got on the phone and said quite matter of factly that she was going to take her life in the next hour and said to say goodbye to my sister-in-law.  We're confident that she wouldn't hurt herself, but she's suddenly talking about it frequently.  She accuses her caretakes of all kinds of mistreatment (pushing her down non-existent stairs, making her pray, "telling her what to do", etc.)


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## ndynt

Bob, I have been out of the loop for awhile...but in Florida it used to  be rather easy to get guardianship. Fifteen-twenty years ago I assisted  in many cases like your in-laws.  I do not imagine much has changed  since then. 
 In Jacksonville they had a special court just for  this...two physicians and a judge.  Just had to have three people  document that they know the person and feel they are unable to care for  themselves and/or a danger to themselves or others. In the case of your Mother-in-law.. where the meds are not effective, if she is even taking them, they may order a admission to get her stabilized. Perhaps after this her symptoms will be controlled.... 
If not, and you would prefer not being appointed guardians...there are  professional guardians  that can be appointed, such as Lutheran Services Guardianship programs for the Elderly...throughout Fl. They  orchestrate the home care or placement in assisted living or ?  See that  bills are being taken care of ect.  
Right now their safety is in danger.  Hopefully the Health Agency will stay in there until you can get it all sorted out.  Wishing you the best of luck.  You are in a difficult situation.
As a former Bostonian....believe me...Florida beats the ice, slush and endless grey days of MA winters....


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## Don M.

Bobw235 said:


> I think what makes this more difficult is seeing how quickly my mother-in-law has gone from a state of confusion, to truly worrisome mental health issues.  Just getting her to agree to go to see a doctor is difficult because she wants to be left alone.  My wife heard her mother screaming and cursing in the background the other day when she called.  Then her mother got on the phone and said quite matter of factly that she was going to take her life in the next hour and said to say goodbye to my sister-in-law.  We're confident that she wouldn't hurt herself, but she's suddenly talking about it frequently.  She accuses her caretakes of all kinds of mistreatment (pushing her down non-existent stairs, making her pray, "telling her what to do", etc.)



The fact that your In-Laws have live in care providers seems to indicate that they feel no need to burden their children with their problems.  It's a sad fact that some people do not "Age" well, and if their burden is placed upon their children's shoulders, the sorrow is often passed to the younger generation.  If they have made the decision to move hundreds of miles away from their relatives, and have the financial means to hire live in caregivers, you might be best advised to let them live out their lives their own way.  Concern for their well being is warranted, but if they are receiving proper medical and domestic care...perhaps "concern" is as far as you should go.


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## ndynt

Don M. said:


> The fact that your In-Laws have live in care providers seems to indicate that they feel no need to burden their children with their problems.  It's a sad fact that some people do not "Age" well, and if their burden is placed upon their children's shoulders, the sorrow is often passed to the younger generation.  If they have made the decision to move hundreds of miles away from their relatives, and have the financial means to hire live in caregivers, you might be best advised to let them live out their lives their own way.  Concern for their well being is warranted, but if they are receiving proper medical and domestic care...perhaps "concern" is as far as you should go.


Don, ideally they do have the right to choose how they want to live.  But, if the husband has dementia and the wife is evidently not able to make a rational decision regarding the need for treatment....is she really receiving proper medical care?  When she is refusing to go to a MD and is displaying great emotional pain...with her paranoia and suicidal ideation?     Is this pain any less than that of a disorder/disease of any other part of her body?  If she broke a limb...and refused treatment should that be ignored also?  I agree with much of what you said...in normal circumstances. Feel this is not a normal circumstance.


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## oldman

It's easy to say, "If it were me, I would........", but it isn't me in your shoes, but if I were, I would make the move to them. First, it is obvious that they are probably nearing the end of their life, so the move would only be temporary and if you then felt compelled to go back to Massachusetts, then by all means, go. I don't know where your folks live in Florida, but along the Gulf coast, the weather is not so bad, except maybe July may be the worse, so far as the heat index. 

Bottom line is to let your heart guide you as to where you need to be, but if it were my Mom and Dad, I would go to Hell, if they needed me just so I could be with them again.


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## Bobw235

Thanks to all who have shared their thoughts here.  It is much appreciated and you've given me lots to consider.  I know that their preference has always been to remain where they are for as long as possible.  The health aids say that for the moment things are managable.  I guess we'll know better after the next visit by my sister-in-law, who is going down to see them next week to assess the situation.  If my mother-in-law can be stabilized (and it has been suggested that she may need to be hospitalized), perhaps we can abide by their wishes and let them stay in FL.  It's hard seeing them decline like this.  Again, I appreciate all the advice everyone has provided here.


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## Don M.

ndynt said:


> Don, ideally they do have the right to choose how they want to live.  But, if the husband has dementia and the wife is evidently not able to make a rational decision regarding the need for treatment....is she really receiving proper medical care?  When she is refusing to go to a MD and is displaying great emotional pain...with her paranoia and suicidal ideation?     Is this pain any less than that of a disorder/disease of any other part of her body?  If she broke a limb...and refused treatment should that be ignored also?  I agree with much of what you said...in normal circumstances. Feel this is not a normal circumstance.



Of course, without knowing all the specific about the elders conditions, I can only "generalize".  However, when Seniors chose to move far away from their relatives, they are, in essence, saying that they don't want to burden their children with any problems they may have in their later years.  When they elect to have "in home" care, they should be trusting the caregivers to make the right decisions.  Insofar as a person refusing to go to the doctor, etc....how can they be "forced" to do so???  

I recently saw a similar case, in our area.  The husband has had ongoing problems for years...diabetes, multiple small strokes, etc.,etc.  He has given up on life, and wishes for the end.  His wife has had her hands full trying to take care of him.  A few weeks ago, he hobbled out to the garage, and slit his wrists.  She found him out there, bleeding, and quickly applied some bandages, and called an ambulance.  He is now in some sort of long term care facility, and not expected to ever come home.  

Sometimes I think that Dr Kevorkian is right.  When a person looses the ability to think rationally, that can be just as bad as a terminal physical illness.


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## Bobw235

Don M. said:


> Of course, without knowing all the specific about the elders conditions, I can only "generalize".  However, when Seniors chose to move far away from their relatives, they are, in essence, saying that they don't want to burden their children with any problems they may have in their later years.  When they elect to have "in home" care, they should be trusting the caregivers to make the right decisions.  Insofar as a person refusing to go to the doctor, etc....how can they be "forced" to do so???
> 
> Sometimes I think that Dr Kevorkian is right.  When a person looses the ability to think rationally, that can be just as bad as a terminal physical illness.



When my in-laws made the choice to retire to a senior community nearly 30 years ago, their present location was ideal.  They had friends, great weather (for them), things to do, they traveled, etc. As time wore on, all their friends died or moved away.  The senior community stopped being exclusively "senior" and now many years later they find themselves isolated from all family and have no friends.  They are basically confined in the condo except for visits to the doctor. 

The kicker is that my mother-in-law has often said that she didn't want to be a "burden" to my wife and her sister, but in fact that's what has happened with them being so far away, but it's impossible to make her see that.  So, we get the calls to "come down" and take care of things for them.  Easier said than done, if only for financial reasons.  Today's crisis du jour involved a call from the caretaker saying that she needs a wheelchair for my mother-in-law, because she's no longer able to use the walker and can't get from room to room.  Doesn't want to be bathed, soiled the bed and is screaming that everyone is hurting her when they try to tend to her needs.  Sigh.


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## Don M.

Bobw235 said:


> When my in-laws made the choice to retire to a senior community nearly 30 years ago, their present location was ideal.  They had friends, great weather (for them), things to do, they traveled, etc. As time wore on, all their friends died or moved away.  The senior community stopped being exclusively "senior" and now many years later they find themselves isolated from all family and have no friends.  They are basically confined in the condo except for visits to the doctor.  The kicker is that my mother-in-law has often said that she didn't want to be a "burden" to my wife and her sister, but in fact that's what has happened with them being so far away, but it's impossible to make her see that.  So, we get the calls to "come down" and take care of things for them.  Easier said than done, if only for financial reasons.  Today's crisis du jour involved a call from the caretaker saying that she needs a wheelchair for my mother-in-law, because she's no longer able to use the walker and can't get from room to room.  Doesn't want to be bathed, soiled the bed and is screaming that everyone is hurting her when they try to tend to her needs.  Sigh.



Yeah, when the Elders make the decision to move far away from family, etc., it places a huge "psychological" burden on their children.  Younger working kids cannot just drop everything and go hundreds of miles to tend to their parents.  All that does is screw up their lives.  These are the kinds of things Seniors need to think about, as we all eventually require some close "supervision".  

If you are in a position where your work, etc., prohibits frequent hasty trips to Florida, it would seem that there are only 2 solutions.  Either convince the Elders to move back to where the family is close by, or take the necessary steps to move them into a full care facility in Florida.  Neither action will be easy, but you can't destroy your life trying to continue the present situation.


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## Bobw235

Based on feedback received from several on here, I'm now talking with my wife about the possibility of temporarily renting a place in FL later this year so that we can get her parents better situated and work out the legal situation in terms of guardianship.  She said she was willing to consider the idea after she recovers from pending surgery in a few weeks.  Will be discussing with her sister.  Might be a good compromise if we can't get them up where we are, at least we can spend time finding the right place for them in FL.  We all feel that the current situation is untenable even with round the clock care in their condo.  As dedicated as the current folks are, they can't provide the quality of care and kind of info we need about their condition.  FL is likely to offer more possibilities in terms of facilities. Thanks again for all the thoughts here.  Most helpful.


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## SeaBreeze

Bobw235 said:


> Today's crisis du jour involved a call from the caretaker saying that she needs a wheelchair for my mother-in-law, because she's no longer able to use the walker and can't get from room to room.  Doesn't want to be bathed, soiled the bed and is screaming that everyone is hurting her when they try to tend to her needs.  Sigh.



Years ago, in the late '90s we moved both of my in laws into our home, my mother in law already had a wheelchair that we bought from this company, and we bought a second one for my father in law when he had his major stroke.  It's just a cheap wheelchair, not this particular model or price of course, back then, but we had no issues with the product. When they passed, we donated one to a lady whose husband needed one, as he needed serious care also.  The other we have in storage, for when one of us may need it.  http://www.drleonards.com/deluxe-wheelchair/a1113.cfm?clicksource=min_1000_104500


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## ndynt

Bob, if a MD will write a prescription for a wheel chair, Medicare will pay 80%.  Your renting a place in a few months, to be able to assess the situation accurately and explore options sounds great.


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## Bobw235

My sister-in-law just met with a woman who runs a healthcare consulting company.  She gave a ton of advice in the hour they spent together, much of it based on personal experience with her own mother's situation.  Lots to consider.  Next step:  family meeting to go over the notes and develop a short term plan and a long range plan.

On a related note, this article in the NY Times may be of interest to those who have chimed in on this thread.  http://opinionator.blogs.nytimes.co...-until-its-gone/?smid=fb-nytopinion&smtyp=cur


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## Bobw235

A quick update.  Meeting with my sister-in-law and her husband over brunch to discuss the pros and cons of moving my in-laws up here to MA vs. moving them to another location in FL that will better suit their needs.  No easy answers here.  Did an exercise suggested by a colleague of my sister-in-law, looking at the pros and cons not only from our vantage point, but also from that of the parents.  It will be interesting to compare notes.  The point is to come to the best solution where there are no easy answers.  Either way we go there will be consequences, some good and some not so good.


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## hollydolly

Well Good luck with it Bob...I really do hope that the best solution comes along for the benefit of all concerned, particularly mum and dad


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## Bobw235

hollydolly said:


> Well Good luck with it Bob...I really do hope that the best solution comes along for the benefit of all concerned, particularly mum and dad



Thanks Hollydolly.  It was a very productive meeting.  We agreed to start by retaining a geriatric care manager and getting a complete medical assessment for my mother-in-law.  There was consensus that at least in the short term, we should not make any moves to bring them up north.  Talked about the possibility of modifying their existing condo to make it more accessible.  Good discussion and at least we now feel like there's consensus on what to do first.


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## Bobw235

Have interviewed three agencies that offer services centered around geriatric care management, and think we've found a good agency to help with an initial assessment followed by recommendations regarding further steps we need to take to ensure good care for both in-laws.  There is a possibility that one of the three in-home caregivers has stolen a valuable piece of jewelry from my mother-in-law, prompting us to get the police involved.  There has to be a special circle of hell reserved for anyone who takes advantage of someone in the state my mother-in-law now finds herself, so out of it from anti-psychotic med that she'd not even realize someone was pulling a ring off her finger (if that's in fact what happened).


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## ndynt

Sadly, it is often difficult to differentiate between reality and the paranoia of a senile person.  Not that there are not individuals that prey on the elderly.   I totally agree about the special circle of hell.   May the geriatric care management resolve your quandry.


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## Bobw235

A quick update for those following this thread.  We will likely move my in-laws up to MA and into an assisted living facility.  Their Dr. has made it clear that they can no longer stay in their FL home even though they have 24 hour care.  They need to be nearer to family.  Neither of them is capable of making decisions for themselves, so we will likely have to go into court to get power of attorney or a guardianship.  Still sorting that out.  It's for the best; they stayed in their home for far longer than was practical, but unfortunately the situation with my mother-in-law is spiraling downward and the doctor has told us it will continue to deteriorate.  At least they will now have their family only a few minutes away instead of a four hour journey.  Still sorting it all out, but hope to have them here by the end of October if the assisted living facility deems them suitable candidates.


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## Bobw235

Since my last post in this thread, things have sadly continued to deteriorate.  My in-laws were rejected for the assisted living facilty as their needs are too great.  Beyond the Alzheimer's disease my father-in-law is suffering from, my mother-in-law is now requiring full-time care for the most basic of life's needs.  Her dementia is in some ways more advanced than that of her husband.  He can at least feed himself, but my mother-in-law now is either in bed or a wheelchair, and though we got her off of the anti-psychotic medicine, which rendered her zombie-like, now she's reverted to aggression.  She's bitten all of the caretakers in recent days. 

 Today my father-in-law fell and they took him to the ER.  Their caretaker didn't think to call our home number and instead left a message on my wife's cell phone, but she never noticed it.  We can't get them up here soon enough.  Now looking into a senior apartment nearby, where they'll have around the clock private care.  My wife lost her composure earlier thinking about what lies ahead.  Can't say I blame her.  All I can say is that we'll get through this together.


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## Shalimar

Best wishes Bob Such a difficult time for you and your wife. I remember caring for my mother, although she was in better shape. All you can do is the best you can do. Regardless you will experience times of frustration, grief, fear, helplessness.

After my mother died, and the grief lessened, I was comforted by the thought I had done everything possible for her. It was fortunate that she died when she did, otherwise she would have been transferred to a home. Her decline was stroke based, she 

remained sufficiently aware that she would never have been able to adapt to losing her home, independence etc. controllers do not age well.


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## SeaBreeze

Bobw235 said:


> Since my last post in this thread, things have sadly continued to deteriorate.  My in-laws were rejected for the assisted living facilty as their needs are too great.  Beyond the Alzheimer's disease my father-in-law is suffering from, my mother-in-law is now requiring full-time care for the most basic of life's needs.  Her dementia is in some ways more advanced than that of her husband.  He can at least feed himself, but my mother-in-law now is either in bed or a wheelchair, and though we got her off of the anti-psychotic medicine, which rendered her zombie-like, now she's reverted to aggression.  She's bitten all of the caretakers in recent days.  Today my father-in-law fell and they took him to the ER.  Their caretaker didn't think to call our home number and instead left a message on my wife's cell phone, but she never noticed it.  We can't get them up here soon enough.  Now looking into a senior apartment nearby, where they'll have around the clock private care.  My wife lost her composure earlier thinking about what lies ahead.  Can't say I blame her.  All I can say is that we'll get through this together.



I'm so sorry to hear that Bob, you and your wife must be very upset and stressed because of this.  Their situations sound very severe to say the least.    I wish you and your wife the strength to deal with all of this, and the best outcome for all of you.   Hope your father in law's fall wasn't too damaging for recovery.


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## fureverywhere

I'm so sorry Bob, while we were separated hubby had both of his parents in an equally bad way. Their insurance didn't cover the care they really needed. His Dad had to be hospitalized when he hallucinated from the wrong med mix, his Mom needed to be sponge bathed eventually...I will always feel guilty leaving him at that time. Assisted living if you can manage it, prayers are with you.


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## Bobw235

Appreciate your kind wishes everyone.  My father-in-law was given some tests in the ER and fortunately they didn't find anything that required his being admitted.  We know this is going to get worse before it gets better.  There are some blessings in that my sister-in-law is up here with us and will be a huge help in their care.  And, my in-laws have the financial resources to pay for full time care.  Just know it's going to get worse, but we're all in this together and it is helpful to be able to share my thoughts, feelings and frustrations in this forum.  Thanks for your understanding and compassion.


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## SeaBreeze

Good to know you and your wife have some help there Bob, and it definitely helps to know that finances to cover care is not an issue, that very good.


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## Butterfly

So sorry you are in this very difficult situation.


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## Bobw235

This is all so incredibly sad and stressful for my wife.  Last night I could only hold her as she sobbed, following a very difficult call with her father, who insisted he had a flight to catch up to Boston, yelling at her because she wouldn't help him catch the flight.  After 10 minutes she convinced him that she'd make the arrangements and pick him up today at the airport, which seemed to calm him down.  I'm sure that 10 minutes later he will have forgotten all about the conversation, but it was hard on my wife.  She is just so shaken by all of this and knowing what we're facing.  Alzheimer's sucks!


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## RadishRose

My thoughts of comfort and strength for you both are heading your way.


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## Shalimar

So sorry Bob, how difficult for both you and your wife. Alzheimer's is a cruel illness. Sending thoughts of strength and courage.:love_heart:


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## Linda

I'm sorry Bob.  As Shalimar said Alzheimer's is a very cruel illness.  My mother-in-law had it.


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## Bobw235

Thanks to all who have shared their support and kind words on this thread.  It is much appreciated.  This is a difficult time for us as we see, albeit from afar, the impact of Alzheimer's on the family.  Soon enough we'll have to face it on a more regular basis once we have my in-laws moved up to MA.  Just waiting for a spot to open up.  I hesitated sharing such uncomfortable news in this setting, but I'm glad I did.  There may be others who have or will be facing similar circumstances with a loved one.  Maybe I can learn from their experience, or they from mine.  Also, for the support that is so evident in the comments above.  This gives me a forum to share my thoughts with folks who are likely to understand what my family is going through.  So, this will almost be a form of diary as my wife and I travel this unfamiliar, scary road.  Thanks again for listening and sharing words of support and wisdom.


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## Bobw235

Well, this just goes from bad to worse.  Awaiting call from hospital.  Father-in-law fell yesterday.  "Pelvic fracture" is the early diagnosis.  Surgery pending.  Once we learn what's up, we'll catch a flight to FL for an indeterminate amount of time.


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## AprilT

So sorry Bob, I've been witness and in the middle of such cases, never easy, the parents are lucky to have such caring people looking in on them as you all.  It does sound like you and your wife are doing everything humanly possible to make things as workable, comfortable and safe for the parents.  This is such a difficult predicament for anyone to find themselves in, may the resolution come sooner than later that will put your mind to rest.  

One of the cases I was involved with, no one even wanted to acknowledge the wife in the situation's mental facilities was deteriorating, they just chucked up some of her erratic behaviors to simple old age and nothing more. Finally by the time she received a diagnosis, at my prompting and my record keeping of things the wife did which may bare affects upon my patients health not limited but including repeated harmful behaviors toward my patient, the hubby, they had to hospitalize her. The family was in complete denial about the mom, but by now she was so far gone, and in a short time after hospitalization she no longer recognized the family members.  What made it worse, she had a caregiver who came to the home daily, wasn't reporting the wife's erratic acts though she too noticed things weren't quite right, she just went along with what some of the children were saying and echoed them by also attributing it to nothing more than old age. 

It was quite a feat getting them, all four kids, to recognize there was an issue, they were a great family, very loving, just hard for them to face the facts of the situation.  I doubt that reporting it earlier could have changed the end outcome for the mom in the case, but, it could have saved their dad some heartbreak and maybe not burdened him with so much sadness from having to deal with being a target of some of their moms rather violent outburst especially while he was on his own deathbed needing comfort from suffering in those last days of his life.


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## Jackie22

Bob, I'm sorry for the difficult time you and your family are having, my mother is 94 and I fear I'll be facing the same soon.


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## Bobw235

I write this from FL, where we arrived late yesterday, following a whilrwind Friday.  Got a call late that night that my father-in-law coded, and because the hospital didn't have his DNR on record, they revived him.  We've since fixed that and brought his living will and healthcare POA with us to the hospital.  We arrived to find him on a ventilator, sedated and in the ICU.  We've told the hospital to withhold the dialysis that was recommended and have met with a hospice nurse to learn what's involved.  Sister-in-law and her husband flying down today.  Strange how life can turn upside down in the space of a few short hours.  Off to try to explain to my mother-in-law what's happening.  Mentally preparing for what will surely be a rough period ahead.


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## jujube

I'll keep your family in my thoughts, Bob.  Keep strong.


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## AprilT

jujube said:


> I'll keep your family in my thoughts, Bob.  Keep strong.



Same here.


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## Karen99

Bob...sorry you're having to go through this right now.  Wishing you well during this hard time.


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## Bobw235

Back in Massachusetts following a first-hand look at the realities of intensive care, hospice and dying.  My father-in-law passed this morning, a little more than 12 hours after being brought to the hospice unit.  Before that we got to see just how invasive advanced medicine can get, the ugly side of keeping one alive against the odds.  It was a relief to see him disconnected from the respirator and all the IVs, in a quiet room, surrounded by four people who loved him dearly.  I played some of his favorite music and held the iPhone up to his ear where he could listen to Tony Bennett, Frank Sinatra, Benny Goodman and so many others.  His daughters talked to him, told him stories, rubbed his head and hands and feet and just comforted him.  We only saw the faintest glimmer of consciousness over the past two days, but we did see a bit of a smile at one point.  In the end, we were not there.  He passed before we could get back to the hospital, around 5:30 this morning, with all of us racing to get there when notified that we best come quickly. He died peacefully and we knew that we had eased his transition from this life to the next.  I held it together pretty well, but the sobs came when I was alone with him, saying my final goodbye after some 42 years.  

Then it was back to his condo to break the news to my mother-in-law, who seemed to understand that he was gone, but then also forgetting that she had visited him just yesterday.  She's too frail to make the trip up here from FL, but we assured her that her husband of over 64 years knew in his final moments that she was there for him.

Again, I say thank you for your kind words of support at this difficult time.  My wife is handling it as best she can, grateful that her father's suffering was over.  As for me, I know there will be more tears in the days ahead, but I am so glad to have been able to be there to support my wife and her sister.  We're a small family, but each of us played a role in supporting each other.


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## Karen99

I'm so glad you got to be with this special person...how nice to play his music for him.  I'm sure he was comforted by you all, Bob.  It's not easy to go through these things.  Be good to yourself.  Please accept my sympathy to you and your family during this sad time.  

:rose::rose:


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## Shalimar

Bob, you helped give him the best gift possible, an easy transition surrounded by peace and love. My heart goes out to you and your family during this painful time. :love_heart:


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## SeaBreeze

Bob, my condolences to you and your family...hugs.  Sending warm thoughts your way, and wishing the best for your wife and mother in law.


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## Bobw235

Grief sucks!  I've not experienced it in many years, but I forgot how heavy this feeling can be.  Sleep has been difficult.  We buried my father-in-law yesterday. I spoke at the gravesite and decided to do so in the form of a letter I wrote to my grandchildren, who will never know this man.  I told them about the qualities that made him special in the eyes of so many.  My sister-in-law and her husband also spoke amidst their tears.  We spent the day at her house, receiving lots of hugs and condolences and eating LOTS of delicious food.  I keep telling my wife this will pass, that it will take time, but eventually life will return to normal.  We're checking in with my mother-in-law, who seems to understand that her spouse is gone.  Eventually she will be up here in MA with us.  My wife is going to view the place with her sister later this week.  

Thanks again for all the support and kind words.  They do mean a lot.


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## RadishRose

You've handled this all magnificently Bob and also touched my heart. May comfort and grace be bestowed onto you and the family. May the new year bring happiness to you all.


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## Karen99

Bob, grief is a heavy load...but one thing we learn about life..it goes on.  How wonderful you've family to talk to and share this with.  I wish you happier days ahead and admire your determination to honor this fine man.


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## Ina

Bob, it really is one day at a time. I am so sorry for the passing of your father-in-law, and the pain you and your family must go through.  I learned that as long as I still have conversations with them, (my sons and husband), in my head, they're still here.  And I think that as long as I need them they will be here for me.  Maybe this thought will help your wife.


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## SeaBreeze

Bob, I really like the idea that you honored him at his funeral in the form of a letter to your grandchildren, very thoughtful and special.  Grief is difficult, but I know with time the sorrow will lessen for you and your wife.  I'm glad your mother in law will be near you soon, you're a good son in law. :love_heart:


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## Butterfly

Bob, I send you my heartfelt sympathy.  I know this can't be an easy time for you and your family.  I'm so glad you are there to support your wife and her sister.  I'm sure it means so much to them.


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## Bobw235

I would just like to say a quick thank you to all who extended condolences.  My wife is doing much better, as is her sister.  One of the things I spent time doing this past weekend was making a slideshow of photos of my late father-in-law.  I took many photos of him over the years and scanned others I found in his condo during a visit last winter.  I organized them into a chronological slideshow and set them to a perfect piece of music.  Oh my, I was not prepared for the reaction it evoked when I watched the finished product.  It was one of those things where I wanted to do something for my grandchildren and my son, and I'm so glad I did this.  A good way to know this special person.  It's weird.  It hurts, but it's joyous in that it celebrates his life and captures his wonderful expression.

My mother-in-law sometimes forgets that her husband is gone, calling out to him.  My wife had to remind her mom that he was gone earlier today.  We'll be bringing my MIL up north as soon as possible.


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## AprilT

Sorry about what MIL is experiencing, it will abate to a degree at some point, she's lucky to have you and your wife.  It's good to hear that your wife and SIL are doing better.  The project for the grand-kids sounds like a great work you put together though it evoked so many emotions for you and I do hope you are caring for you as well, while doing so much for everyone else.


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## SeaBreeze

Bob, the slideshow set to music seems like the perfect loving tribute to him, you're very thoughtful.  Hoping your mother in law copes with her loss as well as possible, it's good to have family like yours to help her through all this.


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## Karen99

Bob..I'm sure he'd be pleased with your heartfelt efforts.  You all need time to grieve.  I wish you all the best.


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## Jackie22

What a very thoughtful and nice thing you did for your love ones, Bob, I wish your family the best too.


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## mitchezz

Bob the slideshow is a wonderful idea. Don't try and stifle your emotions.....your grief is a compliment to your FIL.


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## Bobw235

I thought I'd update this thread for any who have followed it in the past.  My wife is doing well in the aftermath of her father's passing, but her younger sister continues to struggle with bouts of grief from time to time.  This weekend finds my sister-in-law back in FL to check in on her mom.  I felt so badly for her when she told us about a breakdown she had had upon checking into the same hotel where she was the night my FIL passed. Each of us heals in our own time and not according to any schedule.  

The update from her this morning was not encouraging as my mother-in-law has faded further into dementia.  She's barely eating or taking fluids, which also means she is not getting the meds prescribed.  There are some moments of recognition, but they seem to be fleeting.  Much of yesterday her eyes were closed, or she wouldn't speak at all.  It may be time to explore hospice.  My MIL told a psychiatrist the other day, (we were participating via phone) that she wants to die.  

It is difficult being far apart at this stage of our lives.  My wife alternately feels guilt about not being with her mom, but also feels that visits ultimately don't benefit her mom.  The weekend caretaker said something to my SIL last night that made her feel guilty for not visiting sooner in the aftermath of my FIL's passing in late December.  I think it was awful for the caretaker to do that.

It would seem that my MIL is nearing the end of her time, and while it will be sad, it will also be a blessing that her suffering is over.  It's no way to live.


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## Butterfly

I hope your wife and SIL don't get caught up in guilt over "shoulda, woulda coulda" stuff at this sad time.  I think it's important that we all generally do what we think is best in difficult family times, and there's always something we can look back on and wish we had done it differently, for whatever reason.  However, as the old saw says, hindsight is always 20/20.  

And I think it is important to remember that we all grow old and die, and we can't hold back that tide, no matter what we do.  I think your wife's assessment that visits didn't ultimately benefit her mom is probably right on, and that caretaker shouldn't have said such a thing to your SIL.  

We used to visit an old family friend in her nursing home when she was suffering from senile dementia, and no, the visits didn't help her.  If anything, they disturbed and upset her -- she didn't even know who we were or why we were there, and that upset her terribly (and us, too).  We stopped  going.


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## Shalimar

Bob, I agree with Butterfly, the caretaker was totally out of line. Obviously no personal familial experience of such a difficult situation. As a family you have done, and continue to do, the very best you can with love and compassion. What else is there? Saying goodbye as gently as you can. Hugs.


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## Bobw235

Dear friends, I thank you for your kind words of encouragement, understanding and wisdom.  I find myself awake at this late hour wrestling with the situation and beating myself up.  We had a long phone call from my SIL who remains in FL.  My MIL's primary care doctor agrees that hospice should come in to do an evaluation.  My SIL told us that her mom is wasting away (won't eat and barely drinks) and thinks she has little time left.  My MIL, in moments of lucidity, has said things in the past day that suggest she wants to say goodbye and apologize if she ever did anything to hurt my wife (which did on several occasions in years past).  

My wife now feels compelled to fly down to FL and wants me to accompany her.  The practical part of me instantly recoiled at the expense of my joining her.  She of course wants me there to support her (and I understand that).  So now I feel like a complete jerk for thinking of this as a monetary decision, when I should be saying "Of course I'll join you, the cost be damned."  We can afford this.  It's a couple thousand at most.  And as I sit here sorting all this through, waiting for the sleeping pill to work its magic, resenting another trip to FL, I'm beating myself up for not being more understanding and just accepting that this is what we do for family.  I feel cold-hearted.  In the end, I know we'll end up going down, perhaps for the final time, but likely not.  Maybe I'm just raging about something that's out of my control.  An old ethics professor once told me, sometimes the most ethical choice is the one we least want to undertake.  This sucks.


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## Shalimar

Bob, one of the things I hate most about being an adult is that sometimes there are no good choices, often not even clear -cut 
right choices, merely the choices we can live with. It would be odd if your emotions were not all over the place. That is 

completely normal in this situation. Please cut yourself some slack, and allow yourself to be human. Clearly your mother in law has made her peace with death, it remains for you and the rest of your family to  be there for her in whatever way you can. Dying can be a messy, drawn out, painful business. We all process loss, present, and anticipated, differently. That is ok too. Clearly, you are doing your very best to cope. Hugs. :love_heart:


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## Ameriscot

Hugs, Bob.


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## Ken N Tx

Sorry to read about your situation Bob..But yes you should go with your wife for whatever it takes..


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## Karen99

Bob...I understand your dread..but in the end you are right to be there for your wife.  That's the most important thing..and you'll have a better night's sleep knowing you did what you needed to do despite your hesitations. Hang in there.


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## Bobw235

Long chat with my SIL today.  Hospice visited and we've moved my MIL into their care, but she will be at home during this period.  Doctor signed off, saying that my MIL is in a terminal state.  Talking to my wife about taking an extended trip down to FL to be with her, driving our new SUV down there and maybe renting a condo nearby.  No question we have to go there, the question is how quickly.  After today's talk with my SIL, things seem less emergent, so may go next week.  Thanks again for all your advice and good wishes.


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## Bobw235

Just a quick update for anyone following this thread.  We did indeed drive down, taking three days to do it in the new car, going from Massachusetts to Florida.  An interesting experience, if tedious journey.  Driving through the outskirts of DC at night in the rain is not for the faint of heart, especially when you don't know the roads.  What a horror show.

We stayed in a newly opened TownPlace Suites in Boynton Beach, FL.  Have to say, some of the best all-around accommodations we've stayed in for long-term visits.  Got a king suite, with a separate living room.  Highly recommended.  Clean, spacious, quiet and you can cook in the room.

Anyway, we have been at my mother-in-law's condo every day for at least six hours.  She is frail, but eating.  Her dementia has increased and ranges from stone silence to violent rages against everything, from weeping and sobbing to talks of suicide.  Then there is the fear.  She is afraid of everything it seems.  The short-term memory is rapidly diminishing. There have been some occasional moments when she is somewhat rationale and understands what we're saying, but those moments are few and far between.  Yesterday she was raging against Mexicans for some reason (an no, she's not a Trump supporter).  I went in to her room and calmed her, getting her to focus on something else, at which point she calmly announced that she'd probably die in "four or five hours".  Each day is like this.

To fill the time, my wife and I have set out to go through my late father-in-law's closet, a small walk-in unit where he not only kept his clothes, but decades of slides, photos, brochures, maps, political memorabilia, newspaper articles, old magazines, cards, letters, cameras, video tapes, cassette tapes, etc.  We boxed up all his clothing to give to charity, then started going through the papers.  Oh what a task!  My late father-in-law was a meticulous hoarder of things, many of which were labeled, but most of which were just stuffed together in every nook and cranny of the closet. I kid you not, I filled 1/3 of a dumpster with box after box of old VHS cassettes.  There were hundreds of them that he had recorded.  We saved the family ones, but threw away the rest.  Same with the cassette tapes.  

There was gold in this exploration, some laughs and some heartbreak.  Yesterday I started digging into the drawers of the closet, again stuffed with all kinds of folders and found a large one wrapped with a cord.  The folder contained all the materials relating to my wife's late sister's tragic accident which ultimately led to her death.  She had been horribly burned in a massive propane explosion at a construction site when she was just 18.  In the folder were her charred personal effects, including her notebook and wallet, some very graphic photos showing the burns, letters to the lawyers, newspaper accounts and such.  My poor wife.  Oh how she sobbed upon seeing these things.  She felt compelled to go through it, because her father had never showed her these things or even told her that they existed.  

On a lighter note, we found cassette tapes of family gatherings and video tapes of events that will have meaning for us.  And, we have an old VCR that still works and an old 8 mm video tape camera for the smaller tapes so we can play these one day.  

My sister-in-law is finding it too painful to go through her dad's things, let alone go into his old closet.  It was his version of a "man cave".  He'd retire there and type out letters to friends and relatives (saving a copy of each one!) for hours on end.  So to clean out the space is like slowly erasing a part of him from our lives.  It's a weird exercise, but fulfilling in its own right.  It feels somehow good to be doing this, moving on and preparing for when my mother-in-law passes.  I'm sure she doesn't have long, but who knows.  The poor woman has no quality of life and she wants to die.  We're just hoping nature takes its course sooner than later so she can be at peace.

Time to head over for one more day of sorting through the closet, separating the "must save" from the "must toss" things.  The journey continues for one more day, before we start to make our way back home.  I think we'll take more time on the way back and get some much needed R&R time just for us.  We have a week's worth of clothing with us, so may as well take advantage of the fact that we have our own car and can go anywhere we want.


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## Gia

Hello Bob...
My name is Gia and I have only just join this forum yesterday - but I was looking around and I find this topic that you post. (Please excuse me - English is my second language).  I do not have an answer for you - but I can tell you that you situation with you parents is parallel to my friend.

 We also living in Massachusetts, and her parents are in Coral Spring, Florida. Her father have early-mid stage Alzheimer disease, and her mother also is beginning to decline (mentally) from all the stress of caring for him.  They also have aides who coming to they house, and it is very apparent that they both will need to make the move to a safer environment. The aides situation is not terrific - there have been new ones replacing others frequently, and problems with loss of personal items. But -  the situation itself is same thing - the mother is adamant that she will not retorn to live in "cold-state" Massachusetts.

  My friend have get in touch with an advocate in they county, and the advocate will (this week, actually) pay a visit to them to do an assessment and make a report back to my friend.  My friend (Paula) wishes to place them in to an Assisted Living facility near her home here in MA...the father will eventually need to be place in the Alzheimer unit for his own safety, and the mother will have opportunity to relax and still see him on a daily basis while her own needs are attend to. No more worry about cooking and leaving stove burner on alone is worth it to my friend.

 BUT - if they can not be convince to move "back home" they will at least be place in a facility where they will be safe. The thought is that the advocate will speak with the mother about making a move to a safe environment and convince her that it is vital. Generally, they (elderly) will understand and respond more ready to an advocate even more than one of they children. 

 The advocates deal with this issue on a daily basis, and they know what work and what not work.  I know how difficult it is - I have been watching Paula stress over this issue for months now....and she is anxious for the report and recommendation by the professional who will observe and speak with her parents.  (Paula and her husband Jim are not willing OR able to move closer to the parents - they own children and grandchildren are here in the north...moving down to FL was her parents dream, not Paula & Jim's)..... Believe it or not, many of the cases are Florida parents vs. out of state children, so they know what and how to proceed. (It has become a secondary job for professionals...this out-of-stare conferencing.)

  I wish you all the best of luck...I know this is so difficult and I wish I can give to you a more definite and straight forward answer - but I just wanted you to know that you certainly are not alone out there....SO many of our generation are going through this with our parents.  I was fortunate to be able to care for my parents in my own home until they just had to go to a nursing care facility....and then they was not there for very long before they pass.

  It is very important that you speak to the correct people as quickly as possible.  It generally take a frightening crisis for the caregiver (in you case, you wife's Mama) to make the decision for accepting help.  The advocate is able to show drama-acted videos of a spouse who  take the car and was discover driving at night time in heavy traffic - the car was stop in the middle of the highway. Very dangerous, obviously.....but when they see that "OH MY" moments, it begin to take shape in they minds that yes, some thing can happen and I am alone and can not stop it by my self.  In other word - REALITY is presented to them.

  Most of these couples own they own homes and that require selling and disperse of they belongings...so much to think about - but it is they safety that is the most important. I know you know that.... believe it or not, this will all work out for you...and I wish you and you wife and you in-laws all the very best. You are not alone....  From Gia.


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## Bobw235

Thanks Gia.  It's been an interesting and frustrating journey.  As my wife said recently, "my mom got her wish."  We will let her die in FL.  What's ironic and sad now is that she's begging her daughters not to leave her.  Part of this is the dementia talking, but she's getting her wish.  She was stubborn all these years about not wanting to move back and "be a burden", and yet here we are all these years later, being "burdened" because of her inability or unwillingness to see down the road.  It seems harsh, but she's getting what she asked for so often.  I feel for her, I truly do, but now I just hope her death comes quickly and ends this so called life she's living.


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## Shalimar

Wishing you and your family courage and strength to deal with your mother in law's difficult situation. Hugs.


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## Gia

Oh Bob..... again - the parallel continues.  The same for Paula's mother - INDEPENDENT always, now needing help but must be on her own terms.  It is difficult to realize that they beginning to losing they dignity and sense of control as they age - and oh how nice it would be if they would just consent to having help....but some wish to be the PARENT all the way and believe that they childrens do not know what is best for them.  I understanding exactly what you say.... and Paula say the exact same words to me, "she never was want to be a burden, yet she is causing that issue for us without even realizing it" ..... 

 Yes, her death will be the solution, but in the meantime, it is the children who must take over for they safety.  An advocate can be such a big help (also call an Ombudsman I believe?)  .....  I can hear you frustration and I wish for you and you wife to finding the perfect helper to guide you all through this transition time.   God Bless you...and I hope you find the perfect helper to guide you - you and you wife are correct in wanting her parents to be safe and well care for.  Things will begin to happen quickly ...try you best to find some one for helping. 

 Good Luck Bob... I will follow this thread with hopes of a happy outcome for all involve - ...(I am still trying to find my way around here right now).... Take good care - both of you.... From Gia


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## Bobw235

Thanks Shalimar and Gia for your kind wishes of strength and emotional support as we navigate this difficult path.  It is an interesting, often frustrating life lesson.  They don't teach you this in school.


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## Ameriscot

Hope all works out for you and the family, Bob.  Dealing with someone with dementia can be very difficult.  My dad had it but he put faith in my brother and sister to do what was best for him.  He lived very nearby to them in an excellent facility.  Lived there for 9 years I think before he died.


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## Bobw235

Thanks Annie.  We are really fortunate that she has the means to have around the clock care in her home.


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## Ameriscot

Bobw235 said:


> Thanks Annie.  We are really fortunate that she has the means to have around the clock care in her home.



That's great, Bob.  Best to stay in your own home if you can.  My dad's care was extremely expensive, especially since it was 9 years and the last 4 or 5 he was like an infant.


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## jujube

My thoughts are with you and your family, Bob.


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## Gia

Yes... interesting and often frustrating life lessons... hopefully, our generation will learn much from it and prepare our own families for helping US when we are in need.... EVEN BETTER if they will find a cure for Alzheimer disease at the very least.....   Fingers cross for you... Take care... Gia


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## Ameriscot

Gia said:


> Yes... interesting and often frustrating life lessons... hopefully, our generation will learn much from it and prepare our own families for helping US when we are in need.... EVEN BETTER if they will find a cure for Alzheimer disease at the very least.....   Fingers cross for you... Take care... Gia



I keep reading about studies saying it's plaque in the brain and if it's removed, the symptoms are less or gone.  Sounds promising!  I think it's my biggest fear as I age.


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## Gia

Hello Annie .... Yes I have hear that also...... and I just hear that they are working on recovery of memories in mice and it is very very promising. It is a researcher at MIT university who have discover this - that memory is recoverable in certain instances.....there will now be a BIG push for this research.  I think we ALL are worry for develop Alzheimer or ANY dementia, really.  It is so frightening to know that people are living mostly healthy otherwise, but then the brain is develop the disease.  I hoping the research will develop in to some thing that can quickly help those in need!  So many miracles are happening - we should all pray that especially this one will be the answer.  xo


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## Butterfly

Bob235 -- I feel for you, and you're in my thoughts.  Going through my mother's things after she died was very difficult, much junk, but some things of great meaning.  There is still an old cedar chest, where my mother kept her most cherished things, that my sis and I still haven't gone through -- it almost seems like a personal violation to do so.  It just sits in a bedroom in my home, unopened for years.  Maybe we should go ahead and do it, as sis and I are not getting any younger and mother's things would have no meaning at all to anyone else still living.

So sorry you and your wife are having to go through this.


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## Bobw235

Butterfly said:


> Bob235 -- I feel for you, and you're in my thoughts.  Going through my mother's things after she died was very difficult, much junk, but some things of great meaning.  There is still an old cedar chest, where my mother kept her most cherished things, that my sis and I still haven't gone through -- it almost seems like a personal violation to do so.  It just sits in a bedroom in my home, unopened for years.  Maybe we should go ahead and do it, as sis and I are not getting any younger and mother's things would have no meaning at all to anyone else still living.
> 
> So sorry you and your wife are having to go through this.



Thanks for your kind words Butterfly.  For me (and to a lesser extent my wife), this was not so much a painful exercise, but a way of moving forward and feeling productive.  For my sister-in-law it was very emotional as she was much closer to her father.  Every time we threw something in the box for trash, it was as she put it "like another nail in his coffin."  She couldn't even go into his closet while down there.  

I think the tougher part of the trip was seeing just how profound my mother-in-law's dementia has become.  While there are moments of lucidity, there are many more moments of paranoia, hate, anger, sadness, grief, fear, etc.  It's sad to see someone in this state.  

I was actually thinking there might be some benefit in starting a thread on here related to Alzheimer's and dementia, a place where members of the forum can share research, stories, caregiving advice, etc.  What do you think?  This is a subject that sadly will impact many of us in the years to come.


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## Guitarist

At times like this it can be really helpful to be a member of a church or synagogue or other religious community.  Having a church family is not only great when you need support and advice, but having a clergyman with experience and training in matters like this one is invaluable, maybe a lawyer who is a member, other people to help you network.  

It doesn't always work this way, by any means, but sometimes it does.  It can be like having extended family, not only the people in your immediate congregation, but their relatives and friends, some of whom might live in the same place as the relatives you could be trying to help.


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## Bobw235

The situation has stabilized since our visit in March.  My mother-in-law has a visiting hospice nurse coming in once a week and we get an update from them, but nothing seems to have changed.  She is existing, but I think slowly and inevitably declining.  My sister-in-law visited last weekend and reported that her mother barely opened her eyes during the entire time, but did talk from time to time and knew she was there.  My mother-in-law doesn't always know where she is and calls with my wife are hit or miss, mostly the latter.  She can rarely talk on the phone and when she does, most of it doesn't make sense.

We've made plans to go there next month for four days, where we'll continue organizing my late father-in-law's things, donating items to charity and doing what we can to help my mother-in-law.


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