My mom has PSP, and my dad was unable to cope with caring for her, and moved her into a care home in November 2016. They live in Ontario, Canada, so this is partially covered by government, but my dad pays extra to have her in a private room. The private room is the only thing that made this palatable, though along with my siblings, I tried to convince my dad to keep her at home and pay for private care there- with no luck. My mom has always followed my dad's lead - never protesting, always being the one to sacrifice.
I think my dad chose the private room because he didn't think my mom was going to live much longer, but she is amazingly resilient, and doing surprisingly well, despite PSP's cruel progression. Now, he tells us (his kids, there are 5 of us), that he can't afford to keep my mom in a private room any longer and wants to move her into a shared room. He's watching his retirement savings being "eaten away" by my mom's care. Financially, he was always the breadwinner and wanted my mom to stay home to care for us. She went back to work when we were in secondary school but only for 10 years or so.
My mom being moved into a shared room is completely unacceptable to me. She doesn't connect with anyone at the care home; likes being by herself so she can listen to music and read. I call her regularly on Skype and if there was another person in the room, this might not be possible. My siblings visit her regularly with her grandkids and her room is actually a nice cozy place to visit - read books, colour, play games. My dad is living in a 4-bedroom bungalow by himself. He doesn't hesitate to send himself on all-inclusive holidays when he needs them. I know he's looking ahead and wondering how his money will stretch into the next 20 years, but in my mind, half of his savings are my mom's and as she's not going to live 20 years, she gets her portion upfront.
But am I not seeing something from his perspective? Is there another side to what seems like only a completely selfish decision?
The other thing I keep thinking about how is if their positions were switched, and it was my dad with PSP, he likely would never let himself go into a care home in the first place (and of course, my mom would have cared for him). Certainly, he'd definitely never share a room. He would be happy to spend all his money on his own care and give no thought to what my mom would be left with.
This whole situation is making me feel incredibly angry and bitter towards my father, however, in other respects, we need him. I live abroad, my siblings have their own families- he is the one that most consistently will visit my mom every day. So we can't make out right war. But how to handle this situation peacefully and keep my mom from a shared room?
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rloops
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All families are different and then the family members have different takes on things too. There are no rights or wrongs.
Would she be able to return home and have carers come in. Would that be more affordable?
Could he mortgage his home, or get an equity release on it?
Could the whole family chip in a little? The latter might be more palatable if your father were to leave his property to you all?
How would you all feel if she were to have to move into a shared room?
So many questions. Only you guy's can answer them.
How about a family Skype chat?
Best to you
Kevin
People tell me if the shoe were on the other foot Larry would take care of me the way I take care of him. I laugh and say no he wouldn’t. That shocks people. I know it is true. Physically he couldn’t do it. He has a bad back. Emotionally would be a problem for him as well. He would feel trapped. Larry’s apologised to me thinking that’s the way I feel - trapped. I can honesty say I would rather not be in this situation but I have made the decision to deal with it. That earns praise from people. Especially those who have gone through this. It is physically and emotionally demanding. It would seem your father can’t/won’t/dosen’t want do it. How old is he? Would he be physically able to do it? Would he resent it? This is not an easy thing to do. It is unrelenting. My physical and emotional moods swing throughout the day every day.
Welcome to the site. You will get input on any question you ask. Hope mine gives you another perspective.
I think I’m agreeeing with you, I can see why and how you would be feeling like this. Not that that helps you.
Could your father not downsize the property leaving him more in savings to spend on your Mums care.
Very difficult situation, I think I would have to have a serious chat with your father, without letting the resentment come through.
Could one of your siblings take her in and your father pay for care to come in and help.
Hope you get it sorted. Your perspective is your perspective, probably nothing you can do to change that, but your feelings towards your Dad will grow so somehow you need to get a hold on them. Keep talking, hopefully others will chime in and give you more ideas and thoughts.
We have a long-term care home near where I live (Unionville, Ontario) where all their semi-private rooms are only shared by a bathroom (wall between the two beds). The rooms are the same size with a big window and $500.00 monthly less than a private room. May be you could inquire around where your parents live. There is also an Ontario subsidy applicable for basic rooms. I think jeff166 is right on about the difference between husbands and wives as caregivers.
My son, 55 years old, died of PSP May 4, 2017, AT HOME. That was his preference. He had his own home and he loved it. It gave him comfort to be in surroundings that he knew and felt secure. As a mom I was use to trying to accommodate my children. I also would have gladly traded places with him...me being 77 years old and having lived a VERY good life.
In the United States Long Term Care (LTC), for those not defined as being in the "poverty level", is paid for by private insurance. My son, optimistically, did not have LTC. I do. I bought it a number of decades (easily 20+ years) ago because I saw my parent's savings go to LTC for my mother. I pay approx $185 a month. It presently covers about three years of the cost of LTC. Fortunately I have not had to use it, and that is fine with me.
As my son progressed in his PSP, I needed to hire help to come in. He had help for about 5 months before he died. I started out with just having some one come in 4 hours, five days a week. As his disease progressed he needed help at night. Soon it became basically 24 hours. I live in Los Angeles, CA, I fished out an old receipt, 4/24/2017, from DYNAMIC NURSING SERVICES INC, located in Sherman Oaks. Please don't be mislead by the name.....the care my son received was EXCELLENT, but it was not done by LVN or RN. I was paying $20 an hour. For a night shift, 12 hours, the cost was $240. I do not begrudge the cost, but I think those who are fortunate to live in countries where there is help, can not appreciate the cost in the United States.
I often read the sharing of Jeff166 and his care for his loved one, Larry. I admire and respect Jeff's care and honesty in his caring for Larry. I can tell you as a mom who cared for her son that it takes a HUGE toll emotionally. When my son died my body fell apart...not only from grief, but sciatica went out, stomach queasy, etc. It easily took 9 months for my health to return.
To get to your dad and his care for your mom.....my mom (the trigger which motivated me to buy LTC) wanted to stay at home, but my dad knowing himself (they were both in their mid 80's) said she needed to go into a Nursing home. My home suffered from a stroke and some neurological maladies (never medically defined). She was confined to a wheelchair. My mom got very angry and was not a "happy camper". After about three months she calmed down and became adjusted. During that experience I favored my mom's position, but now that I have had experience as a caretaker, I think my dad made a wise wise choice....for both himself and my mom. My mom had care 24 hours a day for whatever medical/bathroom needs she had. She had paid help and therefore they were almost always cheerful and of good disposition. My father would spend the entire day with her......9:30AM to 6pm.....but go home and get a good night's sleep. When he was there with her he would call for the help she needed, but he didn't have to do the lifting, the cleaning of pooh, etc. BTW, my mom was in a room for two.
I know you love your mom a great deal and want what you think is best for her, but perhaps you need to consider both the needs (economic, emotional, etc) of both your parents. I do hope that you are never in the position of having to be a caretaker....it takes a huge toll.
Whatever your Dad does will be wrong? Being a carer is so difficult that it's hard to put into words. My husband died over 12 months ago and I am still struggling. I looked after him at home until it became obvious it was no longer possible. I thought I could take him home again but he went downhill so fast it wasn't possible. I wished with all my heart I could take him home but sadly time ran out for us.
I have felt so guilty as so many others on this site feel because they realise they have reached their limit.
I have no idea how old your Dad is or how long he might live but having enough money to live on will be a worry for him.
Kevin suggested that perhaps you could all pay towards your Mum's single room? Especially if your Dad will leave his property to you anyway? Maybe just maybe he is genuinely worried about how he will cope? He might well have to pay for care for himself?
I don't know how near your siblings are to him and your Mum or what relationship they have with him, but as you live abroad you don't see what is happening to him or to your Mum? They probably don't either. Most children don't understand how terrible all of this is. Even when they visit.
I know mine didn't understand what was happening. They visited but didn't care for my husband as they both worked. That is crucial. You really don't know what it's like until you do it. Your Dad would probably be unable to care for your Mum and only he knows how much money he has left? I think he wouldn't do this unless he was genuinely worried about who will care for him? Where will the money come from and so on.
Nobody wants to have the person they married goodness knows how long ago in a Care Home or Nursing Home. Nobody knows how long it will last for either. I thought we had longer but it wasn't to be. It is totally heartbreaking. Maybe he was the one who led and your Mum followed. Maybe that was the way their relationship worked? It's pretty normal for that to happen depending on their age. Things have changed a lot over the years but for older people it was different.
I really think you need to think about both of your parents and how heartbroken they must be. Even if he didn't love your Mum he would certainly not wish this on his worst enemy unless he is a truly horrible person. I don't think he is. I think he's worried and probably very scared.
I've struggled to respond because I keep feeling very conflicted about your articulate story. I would feel the way you do, but also, having been a caregiver, I understand how demanding it is.
As usual the wisdom of this group is sound: depending on your dad's age, it would make no sense for your mom to return home. She will not get easier to look after - only more difficult, much more difficult. Possibly Ontario Home Support workers are better than here in BC, but even at the low level of subscription I had, the workers changed constantly, some of them you wondered if they'd ever been educated, and there was a longer list of what they wouldn't do, than what the agency let them do (or the health authority...I don't know who determined that.)
And, let's be frank here, many men of the older generations have not been raised to be caregivers! It's always been the women who care and sacrifice, and when the men of that generation are good at it (and there of course, are some wonderful givers) it's rather an anomaly! Not your dad's fault, if this is the case.
Financially, I second Helen 119's comment about your dad downsizing: your mom is entitled to half his estate: so I think a lawyer ( - not that you want to go that $$ route! - ) would argue she's entitled to half of what your dad has to spend: particularly, as our other members above have pointed out, she won't have that many years left! Surely he could be comfortable in a condo or smaller townhouse and still have his lifestyle. Maybe sell it that he will need to transition to something without stairs etc, at some point, so why not now and kill 2 birds with one stone? (..will someone please supply me with a gentler substitute for that saying??!)
PS: SuzanneA's comment is a good one too, eh?
I sympathize rloops...this is darned difficult territory for you XXX
Wow, thank you all so much for your thoughtful replies. I really appreciate the different perspectives and suggestions offered. And also the common understanding that navigating these kinds of decisions is just so difficult! Will take your suggestions on board and discuss with my siblings, and hopefully be able to resolve this peacefully with my father.
Oh my goodness . . . you have a lot on your plate right now. My mom had PSP and things did not always go well but we all tried to do our best, which what I feel you are doing right now. The nursing home mom was in had a great common room for visitors with games, puzzels and a TV with numerous videos. It looked good - useful for families with children. However, I rarely saw it in use. My Mom refused to go there . . . like yours she liked to be alone in her room. (I am that way myself so I understood) PSP is a difficult disease to understand and loved ones have a difficult time figuring out how to help - everyone brings different gifts to the table. It is nice that you and your siblings you can talk about this together. . . Sending You All Hugs - Grannie B
I agree with others about downsizing being a possible option, although when mom was wondering the same thing (whether to sell the house and buy something smaller or on one level), my sister-in-law actually advised against it. She said that it didn't make good financial sense at the time, something about there wouldn't be a lot of money made or saved from selling the house and buying a new place, particularly considering where mom would be ok moving.
(Ottawa's housing market is a bit weird, isn't it)
Does your dad have a financial advisor, and if so, do you think your dad would be ok with some of the family going with him to discuss your mother's care and the costs involved? Mom has been dealing with their FA to move money and investments around in order to get the most out of it with the least damage to the capital.
I can only tell you that I was the primary caregiver for my mum who recently passed away from PSP. I did it for 6 years. It was tough. I was in a position to be with her. Not everyone has a child, spouse, friend who can care for the afflicted loved one at home. My siblings helped weekends. I had private caregivers five days a week, five hours a day to help as it takes two people to do some tasks, e.g. showering, toileting. At first I had a care agency which changed the people too frequently. I found one which gave me the stability, consistency of carers - and I insisted from the outset on that. As to a nursing home: I did not want to put in her a nursing home. I don't think my mother would have lived as long as she did in one. Also, I'll be blunt here, unless you are lucky, PSP patients require close-by, hands on care giving, and nursing homes - unless you pay for it - will not have someone in her room, near her 24/7. Having mum at home I had control over her care, and I could fire any caregivers who didn't pass muster. I was a stickler for detail and ensured she received the best of care in her own home. She deserved it. She was my mother and a very loving one. She reaped what she sowed. Five siblings? Get with the program if you love your mother. It's called sacrifice. Did she not give that to her five children? I'm astonished and sad to see some of the situations. When mum was diagnosed I simply rolled up my sleeves, planned, organised and got on with it. Yes, it was hard, emotional, but it is what it is. Problem? Find a solution. I hope your dad and your siblings will find one. It's there, but there must be a will, and a get with reality check. Also think of the patient first!! There but for the grace of...
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