How do you deal with feeling guilty after you leave your husband with dementia at the nursing home begging to come home?

Hey, jeannegibbs. You offer some good advice. Let's talk sometime, I could use some one on one.

Spanky98, it sounds like you should keep doing what you are doing. Visit her, advocate for her, make sure she is getting the best care she can have, and love her.

You should also (in my opinion) make sure that you and your son get support in this very challenging situation. Joining a caregivers' support group might be very good for you. Counselling for your son may help him through this heartbreaker. He is not to blame and you are not to blame, and getting outside objective assurance of that could be very valuable.

Nana2, I just realized how old your original post was....July 2011. What's going on now in your life?

Ed, it seems like you recovered. Do you think your extended hospital stay and your youth helped you return to live a meaningful life? Age definitely plays a role is what can be expected in recovery. I'm happy for your recovery.

Wow, Spany98, that is tragic for a 41 year old woman. This is your ex-wife, but I am assuming you were married when she had the stroke? Does she have any family members that visit her, besides you and her son? Was her stroke so massive that there is no hope of her improving?

I have a 41 year old ex wife that has had Lupus her whole life, then a couple years ago she had a stroke and eventually I had to put her in a nursing home, there was just no way to work full time, take care of our 13 year old son, and then try and take care of her at the same time, she needs and is getting 24 hour care at the nursing home. We visit her 4-5 times a week but each visit gets harder and harder because she "thinks" she can go home even though the doctors, nurses, and myself know thats not possible. Any suggestions on how to handle her constantly blaming me for everything that has happened to her (the stroke and putting her in the nursing home), and her trying to find a way out of the nursing home? I have POA over her and don't know what to do anymore. It is affecting my son and myself dramatically every day just having her in the nursing home let alone if somehow she got her way to get out of the nursing home on her own (which I don't know if she can do without my approval). I just want the best care for her and I can't give her that at home. What should I do?

I think that we all wish to stay in our homes and care for ourselves until the good Lord calls us upstairs. Hollywood reinforces this myth that we will all die in our beds with a gentle sigh. But, to promise a loved one that they can live at home, no matter what the cost, is not only unrealistic it sets the caregiver up for failure and additional heaps of guilt.
Every situation is different and needs to be evaluated as such. Some of our forum members have made having their loved one at home work, but at a horrific cost to their own physical health, relationships, financial well-being, and mental health. It is no surprise that the majority of caregivers are women. It is society's expectation that women should step up to the plate without complaint or regard for their own wishes or careers. I realize that there are dedicated male caregivers in this forum, but generally most men do not get involved in caregiving in the way that women are expected to. So there is even more guilt to add to the pile.
So I say: to each his or her own. You know in your heart when you have hit the wall and need to ask for help. That can take the form of in-home care, hospice, or accessing the skills of a facility.
This is a hard enough job without having someone from the outside judging what those of us do. That is why this forum is a breath of fresh air for me. I can't say that I always agree with everything that is written, but it has been an education and a support system. I am not at all the naive person I was 2 years ago when I joined the forum and I hope that I have shared a thing or two from my experiences.
Guilt is a killer. If you are making decisions with love and kindness, then there is no reason to second guess yourself.

Thanks Ed for your response and no apology is necessary. Yes, we are a family here and agreeing and disagreeing is good for us....that's how families sort out matters. I understand where you are coming from...been down that road with my father when he was in hospital and later to NH...just harder when it's a spouse. Things have a way of working out, so I am gonna trust in the big Guy upstairs to help me in my decision making and take one day at a time. Keep keeping in touch....I need all of you. Nana2

NANA:

In my post, my heart went out to your husband because I know from personal experience what it's like to be hospitalized for a long time and beg to be taken home. If he can't go home, then he can't. I'm not an authority on this on any other subject; then again no one here is. Our personal experiences might be similar at times, but it'd be arrogant to think there's a clear-cut answer for every dilemma posted here when there's no cookie-cutter formula for anything. So we give our opinions and make some suggestions. My apologies if my words seemed insensitive.

To everyone else, please refrain from turning my posts into some kind of debate. When this happens, that's an indication the individual wants to vent somehow; to tear someone else down so they can feel better about themselves. We're a family here. We might disagree sometimes, but everyone is entitled to their own opinion and we have to respect that instead of taking it things personally.

... Any way you look at it, we're all supportive of one another. That's what AgingCare is all about.

Be well my Lady. Talk to you soon.

-- Ed

Thank you ladies for your kind comments...I'm sure Ed meant no disrespect, but as Jeannegibbs stated, "he dosen't know my situation". Your comments here have given me better insight and have made me feel so much better....and....whatever final decision I have to make, I'll make it with peace of mind. HUGS to you all.

Nana, your hands are already full with your disabled son. I can see why you are concerned that you would not be able to do double duty. You may want to start looking for nursing home placement, and if not, home health aide services. You are between a rock and a hard place, including emotionally. You are only 1 person and you are human with limitations. Sounds like you know your upper limits. Don't second guess yourself. Full-time caregiving is tough even with only 1 person to care for. It hurts when a loved one begs to come back home, but if it can't be done, cry when you need to, and still do what you know you have to do to protect your own health and sanity. Your situation is grueling. Hope you find the best solution that will work for you. Peace.

Nana~I think that feeling guilty will eventually subside-----The fact that you do make the effort and visit, shows that you care.....Caregiving or visiting has to be done with limitations, or you could both loose out......Best on your journey, Hap

Ed, just curious ... do you really think that absolutely every dementia patient can be cared for at home, through all stages, and regardless of other conditions they may have? Regardless of the spouses' own health and capabilities?

On what basis do you doubt that nana's husband is a danger to himself or others? You just generally don't think dementia patients ever get belligerent, violent or destructive, or you have some insights into nana's situation? And how did you conclude that being a danger to himself or others is the only valid reason for placement?

What makes you doubt nana's statement that she can't care for him in her home?

I have cared for my demented husband at home for eight years, and I hope to continue to up to and through hospice. But I have not promised him that, and I just had a family meeting with our 5 children, explaining my intention and also my vow to be realistic about what I can do and what he needs done. I have seen fellow caregivers agonizing over whether/how they could keep their spouse at home, and I have seen cases where clearly the best for all concerned was out-of-home placement, even though the demented person did not see it that way.

Just curious.

NANA:

The only home he wants to go to is the one he shared with you. Where he felt stable, safe, and loved. His pleas for rescue are heartbreaking, but in my opinion he belongs with you ... at home.

Talk with the staff at the Rehab -- and VA -- and explore the costs of taking him home; especially funding sources and some type of home health aide. ... Unless he's a danger to himself and others; which I doubt.

I bid you peace.

-- Ed

Joyewils, I hope you are not beating yourself up for what might have been. You made your decisions in love, intending the best for your mother. It is entirely possible that if you had kept her in your home the care she needed would have consumed your relationship. When others are doing the bulk of the day-to-day care you can continue in your daughter role. The time you had together when you visited wasn't spent with you distracted about a million things you had to do for her. And the outcome would have been just the same: she would have died and you would still miss her like crazy. I am very sorry for your loss.

I can undertand how you feel. My mother was in a nursing home, and whenever we would visit her she would tell me that she was getting better and would be going home soon, I would smile and agree with her. So very sad. I wished that she was alive right now. I would bring her home no matter how difficult her care would be.

Thank you so much for responding to my question...it helps to know there is support out there. The VA dosen't do the Medicaid bit, so I'm sure I will have to go an alternate route if they refuse to take him. No doubt I will have to bring him home after the Rehab days are up and see what care I can get until other sources are available. I also have a disabled son here at home and if he gets down too, there is no way I can tend to both. I sound like a winey butt I know and there are so many worse off then me, but it is so good to have a sounding board to go to and I thank you for your chat.....I really need this.....Nana2

The rehab facility is supposed to have social workers and/or care managers who are supposed to help you if you tell them what you just shared here. They need to understand from you that you can't take him home - unless maybe you can given a lot of help, and that help is available under some kind of community waiver like they have in some states. Make sure they aren't just assuming all is well and you and he are perfectly ready for him to transition to long term care when the rehab part is over (I'm guessing he is in subacute rehab in a skilled nursing facility, and Medicare is covering the first hundred days?) Somehow most people eventualy adjust to the new reality, but its not easy. My dad had to go to skilled care after the umpteenth time Mom had to call paramedics because she could not help him up when he fell. He used to head for the exit at least once daily but the staff were really nice about redirecting him and apparently very sensitive to his feelings. He eventually decided that he was actually in sort of a religious retreat facility and we would be able to visit every so often - he'd read to me - they let him sit and read pretty much all day...Mom was different, she never accepted it entirely, she kept on belieiving if she could just get some more rehab she could get herself ready to go back home, but she was obviously waiting for the incompetent case managers to get it started back up again. For better or for worse, she really had no sense of how much time was passing; after three years away form home, she finally said that she didn't think she could live on her own at home again....but maybe we could find her an apartment. At that point she had been total care other than feeding herself and some grooming tasks she could still do for a couple of years.

Nana2, whatever else happens, don't try to do something that you can't do, or that just can't be done no matter how hard someone wishes for it. Try not to feel guilty for failing to do the impossible.

Can you afford the VA without Medicaid? Are you also applying to other NH? How long can your husband stay in the rehab facility? Is there a chance you might have to bring him home until a NH spot opens up? Could you manage that with some in-home services?

It used to break my heart, too, to hear my husband plead and beg to go home, to pack his bags to go home, to wait at the door for someone to come to take him home. That was all while he was, in fact, at home. I have since learned that this is a very common desire among folks with dementia, and it is often not about going to a particular building, at least not the one they are currently or have recently lived in. Is it a childhood home? Is it just back to a time when they were happy? Who knows. But it is very painful to hear the plea and not be able to give them what they want. We can't make the dementia go away, and that, I think, is what they want and certainly what we want.

Do what you know you have to do, for his sake and yours. Hugs to you!