My mother has Parkinson's, and her mental and physical abilities are variable and have been declining. My father has dedicated his life to being a constant caregiver, and after a decade, he's admitting he can't do it 24 hours a day. They need to spend some nights apart, but I'm worried about what my mom's reaction will be to my father not being constantly available.
We've tried different arrangements, but for about a decade my father is my mother's constant caregiver. As a result, neither have slept well for about a decade. My mother experiences leg pains and anxiety more at night, and she also needs help repositioning herself and going to the bathroom sometimes. Frankly, she also is regressing emotionally some and also needs the attention, especially when she's in pain. She will send away even family or caregivers she trusts and demand my father's help in the middle of the night.
As a result, he is very resentful and angry at times, and completely exhausted. He is frequently confused. (He's taken a cognitive test and did fine, but he makes worrisome mistakes, and at least some of that is long-term lack of sleep.) He felt it was his responsibility, but he's beginning to admit it's too much for him.
We've tried different arrangements: their home in Alabama (with and without hiring caregivers), independent living closer to me and my sister here in Atlanta, renting a home in Alabama, independent living in Alabama, and finally assisted living in Alabama. They're finally realizing they want to be (and need to be) near their children and grandchildren in assisted living here in Atlanta. They're in a one-bedroom right now (there were no two-bedroom assisted living situations in Alabama), but my dad is still often caring for my mom at night, despite help being available and my mom sometimes ringing for staff to help.
I'm really worried for both of them. They're unhappy, my dad is angry and at least temporarily cognitively impaired, my mom is further stressed by my dad's anger, and they don't enjoy each other's company much, which was unlike them when I was growing up.
I've recently largely taken over their finances, and I'm not sure what the options are money-wise. I've floated the idea of two separate apartments at a facility so dad can sleep somewhere else. I'm also talking to my sister about my father spending a night a week with one of us (or one night a week with each of us)--that wouldn't solve the sleep problem, but it would help.
I think we can (after much struggle) help our mom realize her husband needs this and get her to agree to try it, at least in theory. But when he's not there one night, I'm worried she's going to be *very* difficult in the facility she's in. And there will be nights when she doesn't understand or remember any arrangement we've come to and will demand him.
I'm worried about hiring a caregiver to spell my dad--I'm not sure we can make the money stretch that long. I also admit I won't deal with my mother after midnight. I love her and am so grateful to her, but I wouldn't accept the way she treats me at night from anyone.
So I'm curious to hear experiences where, after a spouse was a caregiver at night for a long period of time, he or she began to make themselves unavailable at night to someone who's declining physically, emotionally, and cognitively. What helped the transition? What worked or didn't work?
The time to try something new definitely seems to be when they move back to Atlanta, but I'm not sure what to try.
Get all of your documentation together and consult a certified eldercare attorney /or accountant to find out where your parents are financially and what they best options in terms of long term living.
Optimally, a campus type (i.e. CCRC) would be best because she can be in LTC and he could be in AL or even IL if he qualifies; he could visit whenever he chooses and be a caring husband rather than a frazzled caregiver. I don't feel that a two bedroom situation would improve anything because he will hear her when she calls in the night and all those years of routine will kick in and he will get up and respond so you will be spending money for nothings. If you can swing the large entry fee for a CCRC (they are all different so you will have to see what is available in your area and research their services and policies; some of the one that have been in business for a longer time are faith based rather than for profit corporations; ) then separate facilities should be considered. Remember if parents run our of funds and are in a facility, they will need to apply for Medicaid (Medicare does not pay for custodial care) and most states take anywhere from a 2 - 5 year look over the shoulder to make sure that funds have not be "gifted" in order to qualify. Medicaid is readily accepted in most LTC/SNF facilities; the ALs and MCs that accept Medicaid are few and far between depending on where you are located. That's why you want an accurate balance sheet on the parents now.
Good luck on your journey and please keep us updated. Hugs
Even though they were in AL, mom was his primary care giver, the staff never got to the apartment immediately after the call light was pulled. (While immediate response would be nice - mom and dad still live in the era when the hospitals and SNF were staffed with plenty of help - I admit a faster response than 20 minutes would have helped). It got to the point dad didn't want the staff to help - he wanted mom - and it was affecting her health. So the decision made with AL and hospice was to move him to SNF in the same community. Luckily while in different buildings, AL and SNF were connected by a long hallway and mom could visit as often - or little (depending on how she felt) as she wanted to. Dad died in July - 3 months shy of his 92nd birthday.
Mom and dad don't have a lot of money and since I took over their finances this was the situation I really worried about - dad in SNF and mom in AL all the money being gone and mom still living with no where to live and little income coming in. So if this is a concern find an elder law attorney. I worked my butt off getting all the documentation together but luckily while we had to spend down some money in the end it worked out and mom has enough money for several years unless she ends up in SNF. The 2 year medicaid annuity for mom runs out in April and has paid for her living expenses without touching her pensions and SSA and savings, so for here on out her income pays for a little more or less than half her rent. But the most important thing is dad didn't kill her with all his needs. While dad was always healthy other than the last few years of his life, mom was always more fragile health-wise (she always seemed sick to me growing up and grandma once said she was a sickly child).
Getting your father and mother in separate facilities, ideally in the same community, could help the anger issues and unhappiness of your father, especially after he's able to get some quality sleep - though it will take, IMHO, several months for him to recover, if ever. Your father's cognition may or may not return to what it was; your mother may not become more happy, but it will be healthier with both your parents.
I'm sorry if I rambled, but I wish you and your family the best.
When I feel overwhelmed at the long road of aging, placements, funding, legal, grieving ahead, stories from survivors do help. Thank you.
I also agree that dad needs to sleep in another place so he can get 7-9 hours of sleep every night. It might help if a sitter starts duty in the early evenings when dad is "there" with mom. He can then "go home" to sleep later in the evening when mom has fallen asleep. The time dad leaves can be adjusted over matter of a couple weeks to be with mom for less evening time as she gets used to her sitter(s).
Your mom will not like it. That's pretty much a fact. But, that's the way it has to be. She WILL adjust. Or not. But your dad has got to have his load lightened up ASAP.
You’re right. People always feel like that and there were so many times that I wanted to scream, ‘What about me?’ when I was caring for my parents.
Great point! Everyone should be more aware of this.
TWO lives are at stake here, not one. Treat your father as if his life is just as important and precious as mom's. Allow the poor soul to have respite for a week every month so he can sleep and rest and relax. Just veg out if he wants to. Mom can go into managed care full time, or, she can go into respite care for a week every month while dad gets a break. It's not about what mom 'wants' now but about what dad NEEDS.
You won't accept how mom treats you after midnight and won't deal with her, so get her placed in managed care where the staff WILL deal with her and neither you nor your dad will have to. That's your best bet, frankly. Mom can go into a SNF or a Memory Care, and dad can go into Assisted Living with a Memory Care annex where mom can live. He can go VISIT her there instead of killing himself caring for her. He then gets to go home to his own bed and sleep every night.
Wishing you good luck moving forward.
THIS
My mom has Parkinson’s disease and is now in a hospice house. She is completely bed bound.
There isn’t a cure for Parkinson’s disease. Your mom will never improve. Sure, meds help some but they still struggle with mobility issues.
With progressive diseases, situations always become worse.
Lack of sleep is going to kill your dad. He is going to develop issues. Our minds and bodies are designed to have rest.
My dad had heart issues and a stroke. Mom couldn’t care for him after his heart surgery and stroke. I took care of my dad after a stint in rehab. My mother could never have done it.
I am not suggesting that you take over. It’s incredibly difficult. I was completely exhausted trying to be a wife, mom and caregiver all at once.
I would say that the only viable solution is to place both of them.
Research facilities. See what places are available. Find the best for their needs. Rule out independent living.
Best wishes to you and your family.
If you ask me, your mom needs to be in skilled nursing or memory care, and your dad needs to be in assisted living. It's just about guaranteed he's going to die before she does, because no one can keep that up forever. My dad probably didn't know that he was actually killing himself, but he also was adamant that he honor his marriage vows of "in sickness and health," and he did it admirably. However, the day he was diagnosed, he stopped doing everything for my mother and I took over. He got his first real night's sleep the day we moved him into a hospital bed in the spare room, but of course, it was too late. He died about three weeks after that.
Is the facility where they are equipped with different levels of care? Can your dad be in assisted living while Mom is in skilled nursing or memory care? I think the biggest mistake people make is to put their loved ones in the incorrect level of care.
The husband can visit his wife, but have his needs (like sleep) met also. It needs to work for BOTH of them.
Your personal story really touched me 😞. I am watching my Dad do 24/7 care & he is so dedicated but he is starting to wear out. He is built of the same stuff as yours by the sound. I am so sorry you lost him this way. (((Hugs)))