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

Bobw235

Bobw235

Senior Member
Location
Massachusetts
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
 

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.
 
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.
 

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