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Spouse or Partner Caregiver Forum
I'm all used up
Last year while on a call to Dr. Tam Cummings, I was advised to put my husband into Memory Care. Though on a precipice of despair at the time, struggling to attempt to maintain a "normal" life while working with inadequate home health care, I've managed to not make that move....until now. Since March, 2020, my husband has declined substantially. He dresses, when he can figure it out, but with 2-3 shirts; on backwards and inside out; will not open a drawer, I put everything out for him; now he has great difficulty understanding how to get into the shower and turn it on. He'll undress for bed, then dress again. He'll ask "why" when I tell him he cannot wear his glasses to bed and we wrestle at all hour about this, sometimes I ignore the behavior in order to sleep at least partially during the night.
This weekend alone, I've had to attempt to shave him (though with an electric razor as with a blade I'm dangerous); could only do a mediocre job; soak and cut his toenails that are full of fungus and try not to gag while doing so, attempt to get something out of his eye and more. All the while in mourning for an Uncle who passed away, nobody around to talk to, invite over, share with, I fell into a deep depression, sobbing to a husband who can't understand anything I'm saying. Second night of no sleep until 2 AM, my husband had me up at 5 since he was awake, getting up to go into the bathroom - for no reason; coming back to bed, yanking the covers, fidgeting in bed; putting his glasses on and off and on.....you get the idea. At 5 AM I gave up and got up; told him to dress and go downstairs with the cat. Of course, he didn't understand, but did do it.
Laying in bed, feeling sick from not enough sleep, barely able to see from all the crying yesterday, I'm realizing I cannot continue my life this way. I still work and will have to continue to work in order to hand over a lot of money every month to memory care and hope to provide for myself. After 7 years plus, I'm so tired and depressed and stressed, is THIS what I'm supposed to do, keep him home underneath my feet, looking at me with all kinds of anticipation every moment as he lives his life through me?
Can't help but feel like a failure as his wife when I cannot keep him busy all day, or just sit and rock and listen to him whistle to music for hours. I'm bored and frustrated and feeling isolated - even before Covid. Me, me, me....right? But nothing phases him, or seems to. He lives in la la land and I get to watch it. I'm so apathetic right now, nothing appeals to me; can't do/go anywhere other than work, no ambition, just depressed. This won't change, I mean how can it? I'm not even on top of my game at work because of how I feel. Guess I'll have to buck up and be the B-otch of a wife, and place my husband who will probably adapt and I'll almost die from the guilt. Thought God was merciful??????
It is not a failure to need help in caring for your husband. Placing a loved one in Memory Care is not abandonment. It is giving them a safe place to be cared for.
To not be able to handle it all, only means you are not Super Woman, it does not make you a bad person or make your love for him less real.
After the adjustment period in Memory Care, I would guess that your visits with him will be more enjoyable for you both.
Hope you can find peace in your own mind about making this decision.
I am sorry that you are going through all of this with your DH. I feel “all used up” at times as well, for different reasons. (24/7 toilet monitoring, dressing/undressing DH, preparing meals, assisting with eating, and finally feeding DH, leading him by the hand everywhere, physically putting him into and getting him out of bed, totally performing all hygiene tasks: cleaning after toileting, shaving, toothbrushing, nail clipping, bathing, haircuts). It seems endless. However, he typically sleeps all night, sits quietly for a good portion of the day and I have family nearby, so it’s much more manageable than it might be. I am seriously thinking of arranging a 30 day respite for him (ME) at a MC facility. I’ve pondered this for awhile now, but usually chicken out, thinking, “It’s not so bad, I can keep doing this.” Is there such an outlet at your disposal? Respite is not as drastic as permanent placement, and would give you some breathing room while you sort out your and DH’s future. Whatever path you follow, I hope today is a better day; I am thinking of you.
Good morning riajean.
When it is time for placement, LET THERE BE NO GUILT. NONE AT ALL. You have been a brave caregiver for so long.
The current situation sounds like it is not sustainable based on what you have written.
Do what you have to do to save yourself. You are NOT a failure as a wife or a caregiver or a human being. There is no shame in placement. It may be the best decision for everyone. Like all life changes, I am sure there will be a transition period.
My fear is that if something does not change for you, that this disease will make life for both of you much worse. Placing your husband does not make you a b1tch of a wife. You must do what you must do. You have put great thought into your decision. Its probably one of the hardest decisions a spouse can face. My heart is breaking for you.
Making a decision with love and compassion and self preservation in mind does not make you a b1tch of a wife. In my opinion, it makes you a loving spouse doing what is necessary in an impossible situation.
You are special and you are loved. We are here for you.
Riajean, I can easily but painfully understand what you’re saying. I’ve gone through the same torture (the word my doctor used) just trying to get through each day. Last night my husband was uttering gibberish. He couldn’t get himself ready for bed. After days of refusing to shave and shower, he finally agreed if I showered with him. Believe me, it was anything but romantic.
I tell these tales because everyone here has a story to tell. They are mostly heart-breaking. None has a happy ending. We often feel guilty yet we are doing the best we can. I wound up in the hospital last winter because of all the stress. If you haven’t seen your doctor in awhile, see if an antidepressant might help you (and your husband, on second thought). I got help after my hospitalization. The aide has stayed with us. Despite the fact that my husband refuses all help from her, she cooks, cleans, does laundry, even walks the dog. Those were all the things I did. Now I take care of my husband 24/7. Getting help, whatever it is, can really give you those moments of peace we all seek. There are day care programs, part-time home care, etc. I thought I could handle everything myself. I was wrong.
I know the day will come when I’ll have to place my husband in memory care. I do quite a bit of self-talk about it because I know I’ll feel guilty when the time comes, even though I’ll know in my head that it will be the right thing to do. That one-day-at-a-time mantra is all most of us can handle right now.
Thank you everyone. There's another issue. My son. He says he loves me but literally can't stand me thinking and telling me constantly I'm only thinking of myself; not caring for his father. He has PTSD and is in counseling, but has refused to see me or talk to me in 2 months. He did today because his girlfriend is the one who helps us out 4 days/week so I can go to work for 6 hours/day. She's a sweetheart but everything I say, he hates and refutes. It's just too, too much for me. He's the only kid close by so it's harder to be shut out. He hasn't seen his father; but says I am "casual" in taking care of him, more concerned about my loneliness than his father's care. He's upset that he offered his girlfriend to us as a FAVOR to be our home health person (she gets paid and I pay over what she is given by the organization she works through) because we've gone through 4 in as many years - very inept at understanding and caring for someone with Alz. One actually (a gentleman) took to yelling at my husband then calling me at work complaining.
I think there is no peace anywhere. My son is going to blame me for everything that went wrong in his life as long as he can, though it's such a misinterpretation of the facts. There is no talking to him though I've tried to reassure him his feelings are very important and real, but he needs to work through things that have affected him - like any of us. So, I'm stuck and he's sorry he "volunteered' because I'm not honoring "his financial needs and timeline" - only mine as I am the only one that matters saying he's "sick to him stomach over his father's life and the way it's casually considered as secondary to my pain". Wow.
Can you say 'oh please, keep slamming me'. Does it really have to be this bad? I can't take anymore and that's not a selfish claim, it's the truth. This all is going to kill me.
While it's true that your son is likely to blame you, you do not have to blame yourself. Residential care aides work one shift and go home. Your son has not been providing the care and has no basis to judge you. Someone has to get your spouse the best care he can have, and you have determined that the best care at this point is residential care. I think that's the right call, and certainly none too soon, but remember your son's beliefs are his and they don't have to be yours.
Okay, so he is complaining but he sends his girlfriend to help you 4 days in a 7-day week.
Screw his PTSD! We get PTSD too from this! Place him. There’s no alternative.
Riajean, one of the hardest things I ever had to do was learn to not be co-dependent with my daughter, who had a serious eating disorder as a teenager (spoiler alert: at 31 she's good now). After residential treatment at 15 for a year, then therapeutic boarding school, untold thousands spent on treatment, at 18 she still managed to get herself sick again and taken to the emergency room. I met her there, but then told her that there was nothing more I could do, from that point on it was up to her. I left her in the emergency room to face the hospitalization on her own. Apparently it was the shock she needed, because from then on she started getting better, sought out a therapist on her own, and actually recovered. I had to get to the point of saying, if she dies, she dies, I've done everything I can. It was terrible. But this is my way of saying: set your own boundaries with your son. It may be the best thing you can do for him. And let it go if he doesn't get it, it's his problem.
Agree with Crushed + I will add: it seems that many people have the idea that the PWD has more right to have care, calm + attention than everyone else in the family. WRONG WRONG WRONG. As a spouse, as a child or other relative, you have as much right to a peaceful life...maybe moreso.
As a caregiver, try to detach a bit. Is your stress or unhappiness helping your LO in any way? What advice would you give a cherished friend in your circumstances? Your LO can be well cared for at a facility with your oversight....you will both be happier + healthier, believe me.
Ria, looking at this from the outside, you need some relief from what you are trying to do 24/7 to get some perspective on how dysfunctional your relationships have become. Your son has no right to abuse you in this way + when he starts, hang up. He is not helping you whatsoever. Someone who loves you does not treat you in this way. Clearly, HE is the one who only cares about himself. Please distance yourself from him.
.........crying, I know. So unfair in an already unfair and horrible situation.
Crushed - I did - many, and many who told me to divorce my husband until the area's attorney specializing in Medicaid was on my list. He has been great, however, most of the memory care facilities around me are private pay. I will use both our SSI and whatever the VA can give as my husband does qualify. Then, I continue working............it's really OK for me.
Hope to sleep tonight past 3-5 AM - thank you good people. Honestly!
Crushed - I did - many, and many who told me to divorce my husband until the area's attorney specializing in Medicaid was on my list. He has been great, however, most of the memory care facilities around me are private pay.
New York State’s Assisted Living Program (ALP) pays the cost of
services in licensed assisted living residences throughout the state for
qualified individuals. Participants must require a high level of care,
typically equivalent to the level of care in a nursing home. Although
not without controversy, this program is generally considered a win-win.
This is because residents prefer the increased social and recreational
activities offered in assisted living and the state saves money, as the
cost is significantly less expensive than nursing home care.
While the program is open to non-Medicaid eligible persons, the clear
majority of participants—approaching 90%—are on Medicaid. Each assisted
living residence that participates in the ALP is certified initially
and periodically by the New York State Department of Health. In the
world of financial assistance for assisted living, this program is
almost unique in that its hybrid structure of Medicaid and non-Medicaid
funding allows it to pay for both assisted living care services and the
room and board costs of some participants.
I am so sorry about what you are struggling with.
I get up in the morning and besides making myself coffee, I take my happy pill that being Paxil. Better living through chemistry I say. I also make sure hubby takes his memory pill, that keeps the crazy tamped down somewhat. I honestly don’t think I could have coped without my little pill, as the husband called it.
Your son suffering PTSD is a problem. Perhaps he feels guilty he isn’t doing more. I know that loved ones can unintentionally add stress by their questions, implied criticisms etc. You sure as hell don’t need this on top of what you are going through. I honestly believe, we caregivers also suffer from PTSD.
I wish you calm and peace.
You do what you have to do. Frankly, I have no intention of delaying placement of my wife as long as you have delayed the placement of your husband, and I don't even have to work for a living any more.
You have nothing to feel guilty about. You didn't cause your husband's dementia or your son's PTSD, and you can't fix them, so they are not your fault.
I am sure you will see and hear even less from your son after you are no longer a source of income to him and his GF. Considering the way he treats you, I have difficulty seeing the downside of that. Life gets better when you don't care what people think.
Life gets better when you don't care what people think.
I recently had to make the same decision after 5 years we are still currently at home with outside help. But as I am sure you know they go home to a normal life while you stay to face the declining reality of watching your LO fade to the unknown. Nobody has all the right answers I was also told 11/2 years ago it was Time and just this week I finally let her older siblings know of course they have various opinions. But after a fall this week for no apparent reason and her failure to be able to stand not because she is to weak but she couldn’t figure out how. This disease is relentless and some will see 5 minutes or even 5 hours of “oh she seems good” like you I have to work also and now looking for the absolute most inexpensive way to live so I can get her the best care. We are loosing our entire life day by day. I don’t sleep or eat much anymore. So please know at least one person is right with you at supports in any way I can that you are human and try not to feel guilty for wanting to have what is gone and no certainty of how to take the next step. We are transitioning her early next month only after countless days and nights just as you described. It finally hit me the walls we live in quit being home a long time ago. She will have good days in care but when the really bad ones come they are equipped to manage the care that I am not capable of.
You are not alone!
This has to be the hardest decision we have to make for the care of our loved ones. My beloved had a serious health condition that resulted from my inability to manage adequate care at home. When she went to the hospital I told the staff to look for placement and gave them a list of 5 or 6 facilities I had researched in the area. Thanks to Covid she was placed into my 1st choice. When she was placed I had exactly 10 minutes of exstatic relief and have been in a black depression ever since. After consulting with our doctor I have attempted 6 antidepressants with varying degrees of sucess. I'm no longer suicidal, but if I had a doctor tell me I had a stage 4 cancer and weeks to live it would be cause for celebration. Please, please, talk to your doctor, your minister, a friend or all the above about coping with the loneliness grief and loss when placing your spouse. I was completely unprepared, and to a large extent still am. I know it was time, it was truely the right move for my spouse, I however understand more and more with each passing week how some couples end up in a murder/suicide. Perhaps if I had been better prepared I would be doing as well as my spouse.