Last June I had to put my husband in a nursing home. His father had Parkinson's disease and I think he didn't want to be diagnosed with it so he refused to go to the doctor for 30 years unless it was an emergency.
Over the past 15 years he had gotten to where he could barely use his hands, which he told me was due to typing all the time at his work. I didn't think that was it, but who am I to argue? Over a couple of years, his walking got slower and slower and he started shuffling and still refused to go to the doctor. Then 2 years ago, he started losing weight and lost about 100 lbs in a year and still refused to go to the doctor. He got to where he couldn't hardly get off the couch and needed me to help him adjust himself etc. Basically, help him sit up, get up, roll over, assist him walking, etc. and he still refused to go to the doctor.
Last Feb. 2021, I fell and broke my arm and wrist having to have surgery. So, I couldn't haul him around so much. Then after my arm was better, but not healed, he started falling and I couldn't get him up. We had several ambulance and hospital ER visits to make sure he was ok and hadn't broken anything. He also started having some delusions and forgetfulness several years ago.
I finally got him to agree to go see the doctor and he was diagnosed with high blood pressure and diabetes. We were sent home to come back again in a month. Well, he fell again and the er doc said to go back to the doctor for follow up. I saw a different doctor in the practice and he set us up to go to an intensive rehab place for 21 days of 3 hours of rehab a day. There we discovered that he was incontinent (at home he used a pee pot and the mess he made, I thought was from spillage due to his hands) and they put a catheter in because he couldn't pee. It bothered him so they sent him across the street to the hospital where he was admitted for an infection called sepsis and was in the ICU for a few days. They did a bunch of tests and discovered he had a mass on his pancreas, but despite 85% of pancreas masses being cancerous, we got lucky and his was benign.
Then when they got ready to discharge him back to the intensive rehab, the therapists from the hospital and rehab decided he needed to go to a skilled nursing facility.
So, he was put in a nursing home. He was still losing weight when he got to the nursing home. There he collapsed while walking with a CNA, he did not fall, he collapsed because his hip broke. The hip doctor said that he was a very sick man and that it wasn't unusual for older patients in ill health to break their hip while walking and that causes them to fall. He had his hip ball replaced. Then 3 weeks later, it came out of socket and he had to have it put back in. Oh and when he had the hip replacement, the infection in his kidneys/bladder was back. They upped his antibiotics and when we went for the second surgery, his bloodwork showed it was clear.
They finally got him to stop losing weight and he has gained some of the loss back to where he is at a healthy weight now. But... he has been diagnosed with Parkinson's which I thought he had all along due to his Daddy having it and the progression of not being able to use his hands and walking etc.
He has delusions and thinks he is at home, there are chickens in the kitchen, all kinds of strange things. He knows what a nursing home is and can't comprehend that he is in one sometimes. Anyway, he knows who I am, but... he is confused about so much. My husband has always been extremely smart and has a PhD. He was a great conversationalist and up on what was going on in the world. Since being in the nursing home and before even, he is not the same man I married. I feel sad every time I see him for the loss of such a mind. I feel like I am a bad wife. The nursing home takes great care of him and lets me know everything, but... I hate going to the nursing home and it is hard to go visit him. I am sad and feel like I have lost him.
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.
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.
Wander
My grandpa is in MC right now and I dread it, but I try to see him at least three times a week. I feel guilty and anxious if I don’t, even though I know I shouldn’t. I MISS him so much and I go, and still miss him because I don’t know the person who is there.
Something that might help you which has helped me is it seems to be about quality instead of quantity. When people become like this they don’t necessarily know how often you come but there is evidence that they remember how it felt. My grandpa has dementia so sometimes our visits only go well for 10-15 minutes. Once I realized I was putting too much pressure on a “good/longer” visit. It helped both of us. I feel crazy at times driving over an hour to spend 10 minutes with him, but for now to me it’s worth it.
Sometimes there are no good choices, only least worst ones.
As long as you do visit him regularly, you can fool yourself into making it bearable by focusing more on impersonal factors. For example: set a timer on your phone - you arrive at the NH at (say) 2pm, you set your timer for 2 hours, you know that at 4pm you will be out of there, and at intervals during the visit you can check how much longer there is to go (though you may sometimes feel like time's going backwards). Or, you can occupy yourself with menial housekeeping or admin tasks: go through his bathroom cupboard and clean the shelves, organize his clothes, bring in a box of photographs and postcards you've been meaning to sort out and go through it with (or without!) his participation.
It is horrible for you that he isn't the man you married, but you are still the woman he married (if a bit battered out of shape at the moment) and even though he can't be your other self any more your presence has meaning for him.
Do you have a regular schedule for your visits? How long do you normally stay?
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.
Wander
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.
Wander
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.
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
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))
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