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New here - I am not sure where to post this but I am a newbie and looking for any advice that someone might be able to share.


My father is nearly ninety and has had an Alzheimer's diagnosis for years but on my last trip out to see him recently, I went with him to a neuropsychologist who has determined that he has now crossed from Mild Cognitive Impairment to early Dementia as he scored very low in short-term memory recall.


His wife, my stepmother, has said for years that she wants him to move into assisted living at their retirement community which he is adamantly against -- he feels he doesn't need any caregiver as he does everything himself. She has said that if he won't move there that he must agree to having at least a part-time caregiver three days a week. Again, he is adamantly against this as he sees it as a waste of money.


My stepmother is blind and, due to breaking her femur, is now in a wheelchair and has a full-time live-in caregiver herself since the injury.


She had me come out for a visit as she wanted to me to agree that my Dad needs to have either a caregiver or move into assisted living. I disagreed with her as I saw my Dad handling himself well and none of the issues she was bringing up -- leaving around dirty underwear, not showering, etc. I tried to talk to my Dad about getting the caregiver at least -- trying it for a month or two and then proving that the caregiver had nothing to do. But he is also refusing to do that. Basically, he said, if it comes down to it and he's being forced into having a caregiver or assisted living (she has a POA that he now wishes he had not signed), he wants to instead move back East (he's in California, I'm in Virginia) and live near me and my family -- independently -- which I question a bit as to whether he could really do. He's very good with routine and keeping track of what he needs to do by writing it down in a pocket diary but his wife has been very controlling over the years and she has been the one to pay the bills, make appointments, etc. He also has mobility issues - he has to always use a walker/stroller to go anywhere and it's very slowly. I believe the turtle would win.


I could certainly help with his affairs if he moves here and visit frequently but I would worry about him living in an apartment alone. He doesn't want to move in with me as we have our own issues in the home even though I wish I could have him here. He's not the type to want to share an apartment either with someone he doesn't know. I was told that if tried moving into a retirement community with a doctor's diagnosis of early dementia that he would be refused except if he bought the condo outright (which he could do as he's all right monetarily).


Since I've taken my Dad's side after this recent trip out there, my stepmother has decided to cease all contact with me and is no longer responding to emails. In addition, my father's geriatric case manager, a woman he dislikes (she tends to be very bossy he says), is also not responding to my emails.


I think because I mentioned it to her that it was odd that she went in first with the neuropsychologist and talked with him privately for about 10-15 minutes before bringing my father and I back for the explanation of his dementia. Why would she need to talk to him privately beforehand as this concerned my Dad? My fear is that my stepmother may have had a conference call with the neuropsychologist and the geriatric case manager about how to proceed in order to make me get on her side in regards to my Dad's Alzheimer's. It's also odd that my Dad adamantly says he does not pay this geriatric case manager and wants to fire her but it seems he can't for some reason. However, the geriatric case manager says that she does bill my Dad but she hasn't done so in several months when I asked her at the doctor's office. It may be possible that she's paid by Medicare (and perhaps a condition that she has to be there because of Medicare?) but then she's lying when she said that she bills him and that she hasn't sent any invoices for a few months. So it makes me think that perhaps my stepmother is the one paying and doing so in order to get the diagnosis of dementia so as to force him into assisted living using the POA.


Then again, I might be just jumping to conclusions. But I will say that it seems she no longer loves him and he no longer loves her and they are more like two roommates that don't get along as he subconsciously whistles in the early morning which drives her up a wall as she says it wakes her up. Granted, that may be true but it's not like she has to go out to work or anything -- she can continue to rest and sleep in bed if she wants and a caregiver is there to bring or do whatever she wants.


Any advice anyone has would be appreciated as I'm new to this as I had let my stepmother handle everything for years but now it looks like I need to step in and advocate for my Dad.

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You know the family dynamics better than us posters, but I’m feeling a little defensive for your step mom. She’s blind, in a wheelchair, needing 24 hour care, and seeing her increasing fragility and mortality. Perhaps she’s trying to get her husband, who she realized is also declining, into a good long term situation in case of her death? She doesn’t believe the current situation is tenable and wants to take action, even if it’s as simple as some in-house caregiving for your Dad. I’d give her some kudos for that. I was pretty slow to react when my Mom was showing more mental decline. I don’t know why, maybe embarrassment, maybe sadness, maybe I just couldn’t believe that this very independent woman was starting to show signs of weakness. I don’t know, but I wish I had provided more help sooner. It’s all worked out now, but looking back I think I must have been blind. I just encourage you to think realistically about his condition, knowing it’s not going to get better, and may deteriorate drastically at any time. It’s really a ticking time bomb.

Have you considered that perhaps they could move into an Assisted Living situation as a couple? Places have much larger rooms for couples. Your step mom may still need a private caregiver during waking hours, but perhaps not a live-in. This solution might be more agreeable to both of them.
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ConcernedSon3 Sep 25, 2018
Rocketjcat,

Thanks for writing and yes, that idea of having them move into assisted living came to mind but I'm sure my stepmother would be against it. She just wants peace and quiet and she wouldn't have that living with him in an assisted living apartment.

Granted, she may be trying to arrange things so that he's taken care of if she were to pass before him. However, I'm certain that if she did precede him, it would certainly be that he wouldn't want to stay there but would want to move out to Virginia where I'm located and live in a retirement community here. I would probably then have to insist that it be in an assisted living situation at that point as I just cannot provide the amount of care he will eventually need. In other words, the fight would be down to me at that point to get him to give up some of his independence.

As my stepmother has just said that my idea of having them get an independent mediator that they both like to hash out an agreement as "half-baked", I've decided against any more suggestions on my part. She's thirty years older than me and doesn't want any suggestions from a young 'un like me who only has a bachelor's degree to her PhD. Unfortunately, she does tend to regard people by their degrees and one reason why she was attracted to my Dad since he also had a PhD.

So I'm now trying to stay out of it until such time it's really necessary for me to step in again.
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Read this paragraph again please.

"I could certainly help with his affairs if he moves here and visit frequently but I would worry about him living in an apartment alone. He doesn't want to move in with me as we have our own issues in the home even though I wish I could have him here. He's not the type to want to share an apartment either with someone he doesn't know. I was told that if tried moving into a retirement community with a doctor's diagnosis of early dementia that he would be refused except if he bought the condo outright (which he could do as he's all right monetarily)."

Your comments indicate you agree with your step-mother that your father needs either a caregiver or AL - at least logically. Emotionally you are not ready to accept your father's declining mental state. You're not alone in that - all of us go through that difficulty emotionally accepting the mental changes in our LOs, sometimes long after we have logically accepted reality.

Unfortunately, the person least able to access your father's condition is your father. Memory issues deny him the ability to remember how many difficulties he has in any given day or week. At a time my father still seemed to have only minor problems (one of them bath resistance) I was given a unique opportunity to see how scrambled his mind was. We were doing a minor kitchen renovation and installing a dishwasher in a new location. My father, the construction engineer who had worked in the trades for decades and remodeled a 100 year old house by himself (leveling floors, installing insulation, windows, exterior siding and HVAC, doing all the plumbing and electrical, finishing walls and ceilings) could not figure out how to adapt the dishwasher drain to accommodate the kitchen sink drain going into the wall instead of through the floor as the installation manual showed. Something he should have been able to do without even thinking much about it was now completely beyond his capabilities.

Look at this from your step-mother's point of view. She asked for your support in making a difficult transition and you choose to support your father's denial position and made caring for your father just that much more difficult. Why should she want to continue discussions with someone on the other side of the country that doesn't/won't help her care for her husband properly?

It's normal for your father to be angry with or dislike the people that are limiting his actives/options - in this case his wife and case manager. When/if you support your step-mother or tell him he needs help (caregiver or AL), he will be angry with you too.

Please consider apologizing to your step-mother and explaining that with additional research into dementia and some thought, you have decided she's right. Offer to travel back to CA to talk with your father or help with his move into AL. You might ask if she would prefer the AL placement to be in CA or back in VA near you.
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ConcernedSon3 Sep 23, 2018
TNtechie,

Thank you for writing and I appreciate your thoughts. Yes, I am considering this from my stepmother's position and that I've been in a bit of denial about my father's Alzheimer's. I have written her back to let her know that I'll be supportive of the idea of a caregiver as it seems less drastic than forcing him to move into Assisted Living.

It seems others do have the good point that if he was to move cross-country over to VA where I am, I would only inherit the struggles and fighting that will come with his dementia that will surely worsen over time. And there is the issue of everything changing for him -- doctors, routines, etc. that would be a struggle.

Obviously, I don't want my father to be angry with me and that is probably why I supported him and not my stepmother.

On the other hand, my stepmother has always been very controlling and it seems my father has been at her mercy since his memory began failing. So, at times, I wonder if she still loves him or just puts up with him and now just trying to put him away someplace so she can have peace and quiet.

My wife seems to think the best thing is that I keep out of it as much as possible. When it comes down to it, it's really between the two of them as they are the ones that are married. I want what is best for my father of course but since I hold no power, there is little I can really do. My father doesn't want to show weakness in front of me so he won't accept, from me, the idea that he's ready for a caregiver or assisted living.
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Are you there all the time? If not, he may sundown and be completely confused. His wife has the authority. She has her own health problems and can't care for him. Are u being fair to her. Have u talked to her caretaker? What does she say about Dad. You know he will only get worse and will need more than a caregiver can give.

I would not recommend moving him out of state. It may cause confusion. Also, may keep him from being able to get Medicaid if he may need it. He will need to set up residence before getting any Medicaid help.

An AL is not a prison. He will be safe, fed and cared for. There will be activities and outings. The decision is his wifes and with his diagnosis, her POA comes into effect.

Wife going in to talk to the doctor...I used to write down my concerns and behaviors of my Mom. It helps the doctor ask the right questions to form an opinion.

When it comes to the case worker she is probably telling him things he doesn't want to hear. She is not obligated to talk to you. You don't have POA and Dad needs to sign HIPPA paperwork that its OK to talk to you.

Dad maybe further on than even the doctor realizes. Dr. is not with him 24/7. People with Dementa are able to "showtime".

I think you need to listen to stepmother. She lives with this man 24/7.
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ConcernedSon3 Sep 23, 2018
JoAnn,

Thank you for taking the time to write. Yes, I have talked to my stepmother's caregiver and she has said it has, at times, been difficult. One recent event was where she was taking a shower (she's working there 24 hours a day for my stepmother) and my Dad kept knocking at the bathroom door and he couldn't hear her as he didn't have his hearing aids in and he ended up going in (he wanted to get his razor) and didn't realize she was taking a shower.

Yes, I took a tour of the Assisted Living (AL) of the retirement home. Yes, very nice but the one bedroom unit was like an efficiency apartment -- just a bedroom, small closet, and a living room with a side area with a dorm-size refrigerator, small microwave, small sink and no stove/oven, dishwasher, washer, or dryer. This was because they are supposed to eat all three meals in the catered dining room and their clothes would be washed for them. The room (to me) seemed much too confining compared to the condo that he's been living for the past six years with my stepmother.

And it doesn't seem fair (to me at least) that she gets to stay and have the entire condo to herself either as she's not using most of it that she's mostly in a bed and a wheelchair. Frankly, I think she wants him in the AL simply for peace and quiet. Thus, that is why I fear the POA she has as I see it that she will force him there and, more or less, leave him there and he will die sooner rather than later due to the stress of feeling more alone (it's too expensive for me to make more than two cross-country visits in a year).

I have written her back to say that I'll support the idea of a caregiver as I think it should start like that in order to overcome my Dad's resistance to it. Perhaps just one day a week and increasing over time.
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Writing down things and denying is part of masking the true behavior. You came to visit. He covered up. So now his wife shut you out. If she is mentally intact, she can shut you out of this process.
Many of us caregivers know that if you move him close to you, that the decline will continue and drive you crazy because you will have to deal with the drama. I suggest that you return to the wife with olive branch in hand. She us going through a lot including with her physical decline.
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ConcernedSon3 Sep 23, 2018
MACinCT,

I've decided to support the idea of a caregiver as it's less drastic of the two options (Assisted Living or Caregiver) and written my stepmother to tell her that.

Yes, I realize that having him move close to me would be a huge mistake in the long run. So I'll be advising him against that if it comes to it.

Thank you for taking the time to write.
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Your poor step mother can not possibly continue to care for him and the solution is to break up their marriage and move him near you to live independently?? IMO if you are even considering this you are living in denial, you have no idea how much close supervision it takes when someone has dementia, even in the early stages, and dementia ALWAYS gets worse. Why are you so resistant to AL, have you seen how posh some of these places are?
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ConcernedSon3 Sep 23, 2018
CWillie,

I realize now that having him move near me would be a huge mistake as, in a few years, I would be burdened with the close supervision when his dementia gets worse (which it will).

I am resistant to AL because of the following:

1. It's akin to a posh prison as he would be alone -- he is not really a sociable person that enjoys having small talks with neighbors. He prefers reading and watching TV. He doesn't like the idea of the AL staff coming and trying to be his "friends" as he knows they're not -- it's just a "fake" friendship.

2. The one bedroom unit I was shown was like an efficiency apartment -- very small and without any real kitchen as they're supposed to eat all meals in a communal dining room.

3. It costs thousands more per month -- currently he pays about $2,000 where they live now as his share. This would go up to $5,000 a month and then another $800 to $3,000 a month depending on any and all "care" he receives there. He might be able to afford this for awhile out of savings but what if he lives long enough that it depletes it? What then? Would he still have to pay his share of the condo that his wife would be able to continue to live in? Thus it would that he's paying his $2,000 share plus $5,000 for the small AL room plus more for AL care -- this could an unconscionable $8,000 to $10,000 a month! His savings would be gone but his wife gets what she wants - peace and quiet and the condo all to herself.

4. I doubt my stepmother would visit him often there (maybe once a week if she would be so bothered as I see her just wanting peace and quiet without him) so he would feel very much alone other than my frequent calls and twice-a-year visits (the most I can afford to do cross-country).
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ConcernedSon, you have used the phrase "peace and quite" several times in your postings as a reason your step-mother wants your father in AL so this seems to be a big concern for you. I would like to take a moment to ask you to consider the reality of what "peace and quite" means when dealing with a dementia patient.

Dementia patients wander, often as a way of coping with their anxiety. You may think because your father isn't wandering around the neighborhood he doesn't wander. You would probably be wrong. My father wandered through the house every night - often two or third times a night. He checked the doors and windows were locked, he looked out windows certain someone was in the yard or going through the cars. He moved things in the house: dishes, bills waiting to be paid, medication bottles, eye glasses, books, setting food out of the refrigerator, etc. He blocked the hallway so the burglars would trip on their way to the bedrooms, not at all concerned he or my mother could trip too. My mother didn't get a full night's sleep for YEARS.

Now imagine you are blind and wheelchair dependent. You hear sounds of your husband moving through the house and wonder what he is getting into. Is he going to turn on the stove and burn himself or start a fire? Will he think it's morning and he needs to take his medication again? Will he walk out the front door tonight, he hasn't done that before but maybe tonight? Has he moved my medication or phone or intercom or something else I depend on before I woke up? Will I be able to find it? Should I wake up my caregiver to check on him? If I wake her up and it's nothing will she be mad at me? Will she quit over getting woke up every night?

Just living in the same house as a dementia patient is very stressful - even if you are not providing any direct care. My mother had nowhere near the health problems your step-mother has but the stress of living with and caring for my father greatly degraded her own health to the point her own PCP said it had to stop. Even when your LO isn't wandering through the house, you don't sleep well because you are always worrying about what might happen if you don't catch something soon enough.

You are younger and healthier - how would living with your father impact your stress level?

Yes your step-mother may benefit by having your father move to AL - but he stands to benefit more because he is the one whose safety is most at risk.
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Hi! As you are a ‘newbie’, you probably haven’t read the many many posts from people who have enormous problems with a live in parent, or with one who is close and needs support that increases over time. A few positive posts come from (usually) women who don’t have to earn a living, but the rest are filled with desperation. You and your father are not being realistic if you think that he can move closer to you and not put those pressures on you. Everyone else involved with your father (and most of the responders on this site) seems to think differently from you, so you have at least to consider that they may be correct. It's great that you are thinking it through in advance - you still have the option to 'dodge a bullet'.

Please read a bit more. If you come to the (only?) conclusion that it won’t work, then the move east is not a workable option. That would mean that you have to look at other possibilities. As this is clearly a real daily stress between your father and stepmother, perhaps it isn’t a fair conclusion that they no longer love each other. Removing the stress may uncover the love. The reactions of all three of you are not unusual, but they have to be dealt with because the problem will get worse not better.
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ConcernedSon3 Sep 23, 2018
Margaret,

Thank you for taking the time to write. Yes, I am realizing that if he was to move East three thousand miles at his age, I would only be inheriting the problems that will come with the worsening of his dementia over time. I realize, from what others have written, that I'm in a bit of denial about fully accepting the dementia diagnosis but that is because I only spent six days with him and it seems we were able to discuss things well enough and I didn't see any drastic issues.

Having said, that, I've written back to my stepmother to tell her that I support the idea of a caregiver for him as it seems the less drastic of the two choices of assisted living or caregiver.

My wife is supportive and says that it is perhaps best if I just stay out of it as much as possible as it really is up to the two of them (my father and stepmother) and bringing me into the fray only means that I'm going to get one or both of them angry with me. As I've already got my stepmother upset, I am loathe to get my father angry at me as well.

When the two of them married, they took a vow to care for each other in sickness and in health. I didn't take that vow with them. However, as his only child, I of course want the best for him.

Since he is so adamant against the idea of a caregiver or assisted living, it's not going to be me that changes his mind as my Dad has always been one that doesn't like to show "weakness" to me in any of the illnesses he's had and overcome (prostate cancer, colon cancer, and most recently cancer of the larynx). He always downplays them as he doesn't want to worry me.

I appreciate that you and others have taken the time to write and it has helped. Live long and prosper.
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Wow, that's quite a lot to respond to. I'll respond to what I've experienced and let others tackle the other stuff.

When my Mom started to show cognitive decline or should I say when she wasn't as good at masking it I had to visit privately with her Doctor as well. It wasn't a case of being underhanded or doing things behind her back. She knew I was going as I told her but since I didn't like the idea of discussing her while she was in the room we agreed I'd meet privately with him.

Don't be fooled. Some people with mental decline can hide it very well for short periods of time. It isn't till you are there day after day that you start to notice things. I'm not sticking up for your step mom. She may very well be exactly what you suspect. But I wouldn't immediately discount what she is saying about your father cause as I said, people who want to remain independent will hide their dementia for as long as they are able to.

As far as him living on his own, until you know for sure what he is capable of, I wouldn't agree to that either. Is there anyway you could arrange to talk to the geriatric case manager. As a concerned daughter. It's worth a try. You can speculate till the cows come home but if you could talk to these people yourself it may clear some things up for you. I believe most people in that field want whats best for the patient and aren't conspiring behind people's backs. How would that benefit them?

I don't live in the States but I'm sure others on here who know more about State policies will be able to help you further. Good Luck!
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ConcernedSon3 Sep 23, 2018
Gershun,

Thank you for taking the time to write.

The geriatric case manager isn't responding to my emails now as I asked her for two things. One was why she went in to speak with the neuropsychologist for about 10-15 minutes ahead of my Dad and I when he was there to receive the results of his diagnosis. I found this unusual as what would she need to discuss in private with him ahead of us? She didn't respond to that.

Second, I asked her to provide my Dad with her invoices as she says he pays her and my Dad is adamant that he doesn't. So if she is being truthful about that, why not supply the invoices? What's the big deal?

So she's probably upset that I've questioned her professionalism but it lacks professionalism to at least respond to my questions in my opinion.

You asked how it would benefit them if they want was is best for the patient? Well, I'm fearing that perhaps her invoices are too high and that's why she's not providing them. If you have a patient that you are billing say, $800 a month and all you're doing is attending one doctor's a visit in a month, why would you want to end the cash cow? I don't know how much she is getting paid and is could be that he is overpaying her as he just accepts what bills are given to him. My stepmother had her financial assistant come by while I was there and she told my father to transfer $3,000 towards estimated taxes for 2018 into another account and he went and did it. Is that really going towards estimated taxes or what? I fear he could be taken advantage of financially since he has put his trust into his wife when it comes to financial matters.
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If your father is still competent, I would have him revoke the POA and assign to you. This will allow you to do the decision making. Be sure that you get both medical and financial POA. You should do this immediately. Dementia only gets worse. Then you and your father can determine his needs and do the decision making.
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ConcernedSon3 Sep 23, 2018
UsedupDIL,

Interesting idea but I fear that since he now has one doctor having diagnosed him as having dementia, I don't know if legally he can revoke the POA and assign to me. If he were somehow able to do that, I'm sure I would be for a fight with my stepmother as she likes to be in full control over everything.

Then, of course, I would be the one inheriting the fight over his having a caregiver and/or Assisted Living as one or both of these are surely coming down the pike if not now then later. I don't want to be the one arguing with my Dad if I can help it.
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I have read some of your replies and want to give info on part of your thinking...
A change in POA can only be granted by your father. He now has some memory loss which could leave a transfer in question.

You now see the sticker shock from AL. Yes, that sounds about right

Your dad may be closed off to living with others. Private ALs do offer lots of entertainment, but residents can choose if they want to participate or stay in their rooms. There are many residents who really thrive in the communities. Their health improves as staff recognize hazards. One does not die from depression. The disease or some other disease like cancer will eventually kill.

You may find that paying for caregivers for longer periods of time will far exceed the costs of AL.
The wife living alone is immaterial, although she is blind and she may need assistance to move into smaller quarters. Can she do this by herself? It sounds like she is asking for assistance as well. Yes she will get some peace and quiet. Do you know what time dad starts whistling? 4 am, 6 am, 8 am? How late does he keep her awake?

Finally, their estate cannot be drained to just pay for dad and leave her impoverished. They are married. If they are in CA, their assets may be 50-50. His wife has POA and sounds competent. However you might want to have her consult an elder attorney. You may know their financial situation. I recommend that you read a long titled book that I am partially writing called How to protect your family's assets by Gabriel Heiser
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ConcernedSon3 Sep 25, 2018
MacinCT,

Thanks for writing back. Actually an idea that sprung to mind last night was why don't the TWO of them move into Assisted Living since my stepmother is already having 24/7 assistance but I am loathe to suggest that to her as she just wrote that a suggestion I had was "half-baked" - that they get an independent mediator that they both like to hash out an agreement on what will happen and when. She basically just wants the annoyance of my Dad out of her life and AL is the answer.

Yes, I don't know if my Dad can undo the POA since he's now diagnosed with dementia. I also don't see him doing the steps towards trying to get it undone as he just doesn't want a fight.

Assisted Living at their retirement community looks nice enough but there is something "different" when you go back to a very small apartment and NO ONE is there once the door shuts. Having an aide drop in, although as cheerful as they try to be, is still a worker and he realizes that. This isn't someone who's dropping by because he or she likes him. He's just next on the list.

As for the whistling issue, I think it starts about 7AM when he wakes up and is getting ready to go for breakfast at the community's dining room. Evidently, it wakes up my stepmother and that irritates her. She is easily irritated as I have to be very careful of what I say and do when I'm there, for example. If I don't hear her, I cannot say "what?" but instead have to say "I'm sorry?" or "Come again?" as she considers the interrogative "what" to sound as if one is stupid. I cannot put a drink down on any table as it must have a coaster/placemat as the tables are too expensive something she has told me I don't understand because I've never had fine-quality furniture. For which, I had to tell her "Because I'm poor!" My furniture comes from Ikea or thrift shops where as hers comes Ethan Allen or Thomasville, for example.

I will look up the book you suggested. Thank you.
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