Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
My mother lived in a Memory Care Assisted Living facility for nearly 3 years; the last year of her life she had advanced dementia. It was very hard for me to go see her in that condition and I too dreaded it every single time. But I felt it was necessary for me to go see her; I was all she had, really. So my husband and I would go every week, even during the Covid lockdowns, for a window visit, sometimes standing outside in the snow to talk to her over the phone. I needed to lay eyes on her to make sure she looked well cared for. So the MC would know that I was there, too, advocating for her, etc. I also kept in close touch with the staff to make sure she had everything she needed in terms of clothing, shoes, supplies, etc. But we only visited once a week until she got very close to the end of her life, and then we'd visit 2-3x a week and daily during the last week of her life when she was bedbound and pretty much comatose.

My point is, do what YOU feel is appropriate; visit when YOU feel up to it. I don't think I've ever read on this forum that a loved one felt 'happy' or 'excited' to go visit a loved one with dementia in managed care. It's a dreadful experience for the vast majority of us b/c we've lost them to a disease that's robbed us OF them, for the most part. What's left is sad and confused and difficult to understand and deal with, let's face it. They want to 'come home', they want to understand and make sense of something senseless that's happened to them. We can't fix it for them, either, and that makes US feel helpless which, in my opinion, is the worst feeling of all. Helplessness in the face of such a dreadful situation. We have to sit there and watch them falling deeper and deeper into the pit of dementia which strips them of who they are entirely. Of course we hate it. I hate dementia with every ounce of my being, to be honest with you.

I cried more while my mother was alive than I have now that she's passed. She's at peace now and she was certainly wasn't while she was alive but riddled with dementia. She had her happy moments, however, when I'd go visit and bring her photos of her great grandson, snacks, tops with matching jewelry, perfume, nightgowns, etc. So I have good memories of those moments we shared together. When you do go visit DH, make those memories count so after he passes, you'll have that to hold onto yourself, that's my suggestion. But don't beat yourself up over what you 'can't' do because you have a life too, apart from his. Remember that dementia wrecks everybody's life, not just the one suffering from it.

Wishing you the best of luck coming up with a plan that will work for YOU. Sending you a hug and a prayer for peace.
Helpful Answer (25)
Report
Wanderdragon Apr 2022
Thank you. :) HUGS<
Wander
(2)
Report
See 1 more reply
Visit as often as is comfortable to you.
Even if your visit is for a few minutes.
I have no proof of this next bit but....
If you visit I think the staff will take a bit of extra care with your husband knowing that you visit. It may be because you would notice if something was "off" or is it because when you visit you actually greet the staff and acknowledge them for the care that they give.
Many do not understand that when we lose our spouse bit by bit it is a constant state of grief we live in. When there is a decline that decline is a death of sorts.
A friend of mine in a Support Group called herself and others "Married Widows" and that term seems to fit.
Do what you can and what is comfortable for you.
((hugs)) this is a tough journey.
Helpful Answer (12)
Report
Wanderdragon Apr 2022
Thank you. Married Widows. That sounds about right. I have been calling myself a Nursing Home Widow. Because the man I married is gone and has been replaced by my memories of him and a shell of a body to visit in the nursing home to visit.

I never visit on the same day or at the same time so they never know when I am coming in as I had heard that they take better care of them if you go regularly. When he was first put in I was up there every day all day long. That lasted about 6 months and then I got too tired and winter set in. I don't like to drive in bad weather or after dark. When it gets cold, I like to cuddle down in the house to stay warm. So, the visits went to every other day for hours and then the time got shorter each day. Now, it is once or twice a week. I feel bad for not wanting to go, but I get up with the intent on getting there early and by the time I get up the whatever I need mentally to go, it is afternoon sometimes and I am about to have a panic attack because I have to go to the nursing home. That doesn't make any sense, as they are all real nice to me and the husband, but I dread going so bad.

Most of the CNA's laugh and chatter at all the residents making them feel like their opinions still matter and they regularly go down the hall checking and taking care of the residents. I see it as I am coming and going. It is a very small nursing home as we live way out in the country in Tennessee. I think they have 70 beds total. They have the dining room and a small place beside the nursing desk as well as a big room for rehab. They have a sitting room, but it is right next to the door where they all go out to smoke and it reeks so we can't go sit there comfortably. But they have to have it for the residents who smoke so I understand that. So they don't really have a place other than his room that we can go.

Anyway, I wanted to thank you all for your advice. It is very sweet of you to help me with my feelings. I know I was his caregiver when he was at home, but.. now he is in the nursing home, I didn't feel that was the correct term for me so it took me a while to read this forum.

Thank you again for your responses. Hugs,
Wander
(10)
Report
Decades ago I read in Reader's Digest a thought of the day type of thing. A friend was asking his buddy why does he go to the nursing home to see his wife when she doesn't even know who he is? The buddy smiled and answerd "I know who she is".
Helpful Answer (28)
Report
Wanderdragon Apr 2022
Yes, I read that too. Thank you. :)
(6)
Report
Yes, your husband seems to be in a precarious health condition. He seems to have been very lucky so far to still be alive. He now has a confirmed Parkinson's diagnosis and what appears to be a Lewy body type dementia, which frequently co-exists with Parkinson's. He certainly, must look pathetic and unrecognizable to you. I understand that it hurts you too much to see him in this condition. I don't see why you can't drop you visits to the bare minimum. With his dementia, he would rarely miss you. Besides, his days are counted. He is beyond having a full recovery.
Helpful Answer (3)
Report
Wanderdragon Apr 2022
Yes, he is not in the greatest health, but it has improved with the nursing home's care. After his hip surgery, the surgeon told me that 70% of the people in the shape he is in pass away within a year after that type of surgery. He may live like this for years, or he might be gone in months, who knows because he beat the odds with the mass on his pancreas, he beat the sepsis, and his blood pressure and diabetes are now under control. On one hand, I want him to live as long as possible and on the other, I don't want him to suffer the indignity of being in the situation he is in or any pain. It is a sucky situation all around for both of us.

Luckily, he knows who I am and is always happy to see me. I am happy that he is a good dementia person and usually agreeable and cooperative with the staff at the nursing home. There were a couple of times when he got kinda ornery the first few months, but the CNA told me about it and I fussed at him to be nice to the nurses and it hasn't happened since. When I leave I always tell him to be good for the nurses so they can take the best care of you so you can get better and come home if he isn't confused about being at home. Otherwise, I just tell him to be good for the nurses. I know he is never coming home, but he doesn't and that is OK as long as he is happy in his mind.

There are days that he is there and there are days he is not. So... that is why I have to go and see him regularly. I never know when he will be in. If that makes any sense. Anyway, thank you for your kind message. HUGS<
Wander
(11)
Report
You have lost the person you knew and its hard. The worst thing is watching them slip away. That blank stare you get sometimes. You can't share memories because they lost them.

Yes, if ur visiting in his room, get out into the common area where there are other people. I had a lovely lady at Moms NH that visited her DH everyday. A stroke had left him almost in a vegetable state. He never talked or showed he was aware. But, she would be there sitting next to him chattering away to him. She knew my Mom so we would keep Mom and her husband near while we talked. Every so often she would look over at Mom and say "what do you think of that P".

My daughter was an RN in nursing homes. She told me I didn't have to visit. Their time is not our time. You could visit everyday and go in one day and hear "I haven't seen u in a week". If you don't feel you can go, don't. Visiting is really for you. I was able to visit Mom everyday in the AL because it was literally up the road 5 min away. I stayed from 15 min to an hour. NH was 15min away in another town. I went every other day for no more than an hr. I have a friend whose husband was in a facility with ALZ and she traveled. We do what we need for us. If you don't feel the need then don't go. Its OK and please don't have any guilt. This did not happen from anything you did or did not do. ((Hugs))
Helpful Answer (10)
Report

Wow. What a sad situation for you both! No one could blame you for dreading the visits. I would too. 

Please know you are not a bad wife! There is nothing you could have done to help him at this point in his illness. You love him so much that you put his needs above your own. Placing him was the best thing for him, but it was the saddest thing for you. Yet you loved him enough to put your feelings aside for his needs. The selfish thing to do would have been insisting to care for him alone at your home, knowing full well you were not capable of doing so. He’d have suffered even more.

It makes total sense that you are grieving a loss, because this IS a loss. You're right; he isn't the same man you married. Your husband is physically here, but his mind is not. It's sad. It's unfair. It's a hurt only people who've gone through the same situation would understand. Maybe you can find a support group in your area? If you attend a church, it's likely there are people who have had the same experience. Right now it probably feels so lonely, like no one else could relate. It can help to reach out-- when you feel ready to do so. 

A heads up, though: there are many people on this site who are very anti-nursing home and anti-medication. And some of them love to lay guilt trips and criticism for people in your position. Kindly pay them no mind.
Helpful Answer (31)
Report
PatsyN Apr 2022
(6)
Report
See 1 more reply
You are by NO means “a bad wife”. Not even close. Your husband neglected HIMSELF, as people sometimes do. YOU did NOT neglect him.

Does your husband’s nursing home have some sort of a gathering room or common area so that you’re not isolated in his room?

I learned during the 5+ years when my mom was in residential care how many nice people were in the same boat as caregivers as I was, and we all encouraged each other as time passed.

Please take extra good care of yourself.
Helpful Answer (13)
Report
Wanderdragon Apr 2022
Thank you so much. I appreciate your reply and advice. Hugs,

Wander
(1)
Report
Oh dear, you've both been through so much! You have every right to grieve the loss. Your husband probably may also have Lewy Body Dementia, which often accompanies Parkinsons:

https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025

If the care facility offers activities and events, maybe go visit him during those times so that you're doing something together with him. Then leave right before the activity is over so that he is distracted by others there.

For some challenges in life there are just no good solutions. May you receive peace in your heart and please take care of yourself.
Helpful Answer (13)
Report
Wanderdragon Apr 2022
Thank you so much for the link and the advice. I appreciate you. HUGS<

Wander
(0)
Report
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter