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.
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.
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.
"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.
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.
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).
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.
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.
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.
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.
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.
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!
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.
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.
When dealing with someone with dementia, they very often can pull it together for a visit with someone or a doctor's visit. That doesn't mean they don't have dementia. It's called "showtiming".
It is highly recommended by experts that you not discuss your loved one's noticed deficiencies in front of them. It makes them defensive and uncooperative. They are sure you are lying. "I never did that. Why are you lying?"
If your dad does have Alzheimer's it is only going to get worse. He will definitely need more assistance going forward. I'm sorry your stepmother isn't keeping you informed. She should be giving you more time to process this terrible diagnosis. The geriatric care manager is bound by HIPAA rules and probably hasn't been given permission to speak with you. Maybe your dad could sign a HIPAA release and let the doctors and geriatric care manager keep you informed.
A diagnosis of Alzheimer's does not, all by itself, make a person legally incompetent. He may still be able to make decisions for himself. His lawyer would be the best one for him to contact if he'd like to know what changes he can make to his Power of Attorney. You can also request a Certificate of Competency from his family physician if he has one that has known him for years. Good luck!
Your situation reminds me of my story with my Dad. In January 2017, I moved my 89-year-old Dad- who is cognitively impaired, incontinent, legally blind, and can only walk short distances with his walker - from GA to CA. His living situation no longer was working well for him. He declined, had a mild heart attack and ended up in a hospital, followed by rehab. I went to GA to emotionally support him and try to discern where he should be. He really wanted to move back to CA. My husband and I finding an AL facility near us in CA that would meet his physical needs.
The day of the flight was a very long challenging day. We picked him up from the Rehab at 9:30am and got to the CA AL at 9pm - but he survived (so did we😉😊).
Over the past 20 months, my Dad has improved so much emotionally and physically. What I have discovered over the months is that I am a very significant key to my dad’s mental health. I cannot care for his bodily needs, but I can trigger those precious memories that are in his brain.
Dad’s AL facility is only 15 minutes away, I can visit him 2-4 times a week. The frequent contacts enable me to observe and reflect on his words and various emotional, physical states. They also enable my Dad to develop trust in me, that I can discern what he needs and engage the resources available to meet his needs. On Sundays I pick him up and take him to church with us, where he can watch the children play together, be greeted by name, be stimulated by a God’s word, and during communion remember that Jesus suffered and died for the love of his soul. During the week there are doctor appointments and visits in Starbucks. He looks forward to sipping his coffee, watching young students interact with each other, and reminiscing with me.
I hope that you will explore the option of having your Dad living in an AL facility near your home. You are your Dad’s only son, and so you share significant history with your Dad. You have an opportunity to slowly develop a relationship with your Dad. As he feels cared for, it will be easier for him to come out of denial about the loss of his physical abilities. If you are in his life advocating and visiting him, he may eventually become more humble and thankful for the important role you play in his happiness.
In the next 3-6 months, I encourage you to watch and see what happens with your Dad and step-mother. Meanwhile keep asking yourself these questions: 1) What is the best living situation for my Dad, and 2) what kind of time and energy can I realistically give to my Dad, given the season of life that I am in, if he (and possibly step mother) were to live closer to me? Do I have time to visit my Dad and to advocate for him?
Thank you for writing about what you did with your Dad.
I don't believe my Dad would benefit psychologically being forced into Assisted Living as that is what it would be in his mind right now if he was told to pack his bags and move into an assisted living apartment in the community. His wife, my stepmother, says she has a POA to do so but hasn't yet but could do so tomorrow for all I know.
My Dad does have a mobile phone but rarely carries with him, much less turn it on. So calling him involves calling the home phone which, of course, is controlled by my stepmother since she keeps a cordless phone with her in the bed at all times.
As much as I would like spending time with my Dad by moving him to an AL near me (as you did), I realize the option would be selfish on my part and would be bringing a lot of issues not only onto me but also onto my wife and daughter. We, as a family, have our own issues since my daughter is autistic.
My stepmother is upset with me since I didn't take her side immediately after I went out there and that I didn't immediately begin yelling at my Dad that he needs to move into Assisted Living. I was only out there for one week and no substantive changes are going to be made in that short of a time. I believe it would take weeks, if not months, for me to be with my Dad to get him to a point where he sees things differently.
All of this, I think, will end up with my stepmother forcing him into AL at some point (perhaps early next year) and my Dad doing his best to fight it although he is not a confrontational person and avoids fights.