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.
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
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.
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))
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
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
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?
Don't agonize over the years your husband never saw a doctor. He might be in much the same condition right now even if he had been diagnosed years earlier. Some conditions can be treated and slowed down, but not cured.
If you can bring yourself to visit him, interact with him with no expectations or comparisons to "how he used to be.". How would you respond to him if he were a stranger you were there to help and not your husband? If he is as clueless and unaware as a "box of rocks," rejoice that he is happy and comfortable and well taken care of. With all the illnesses and mishaps your husband has survived, someone is doing a good job of caring for him.
I am always upbeat when I visit and chat with him until I run out of stuff to say. We watch a bit of TV together. Then I go home.
I just feel bad that there is nothing I can do to "fix" him. I worry about him. I worry about me without him. I am dealing with it as best I can. I did get me one of those "help I have fallen and can't get up" bracelets/necklaces since I am now by myself and live out in the country. When he was at home, I knew if something happened he could call 911. Now, I have a button, but it is not the same thing as knowing someone loves you and will worry about you.
It is depressing to say the least any way you look at it, from his side or mine.
Thank you for your thoughts.
Hugs,
Wander
My dad was the one who I had to visit in the NH. I always felt so bad, but I couldn’t take care of him at home. I knew things would never be the same again and I had to face the reality that this was it until he passed. (He too had PD and Lewy body). Looking back on things, I would probably feel even worse if I didn’t go see him and try to make his day brighter. We do our best with a very unfamiliar situation. Do your best and you won’t question yourself in the end. It is what it is. I’m thankful for the wonderful care he received when I wasn’t there. It doesn’t make things perfect, but it sure helps. Blessings to you and your husband. You’ve stood by him. Pat yourself in the back.
hugs,
Wander
Hugs,
Wander
Hugs,
Wander
my motherinlaw went to memory care. I dont know if her husband or my husband went to see her … neither said and i didnt ask … but i did … once a week. I tried two times one week but she didnt recognize me the last time.
shortly after she first got there she started to introduce me to her roommate. Paused. And called me her friend.
strangely she recognized me on my once a week visits.
I didnt care if she really knew me or not tho. Her friend visited and that was enough for me.
Wander
I didn’t visit her with any agenda such as hoping she’d return to her youthful self. I did it because it was the right thing to do.
Wander
And remind myself of my marriage vows, to love, and honor him for better or worse, in sickness or in health, til death do us part. We didn't promise to care just until it got hard.
He died at 91 and even tho' I miss him terribly, I know I did my best to provide him the best care I could; I managed to keep him at home until just 4 days before he died in hospice.
I suggest your poor husband needs you now more than ever ; he is confused, and needs the reassurance of your continued presence, to help him feel safe and loved.
I know it is hard, but I hope you will be able to love him still for the man he was all those years before his Parkinson's and in time, after he is gone, you will be able to remember him more clearly in the better years, and you won't have any guilt that you didn't fully support him in his declining years.
Prayers are with you both.
Wander
Nursing homes are often neglectful and abusive to their patients. It should be your husband's decision what happens to him, not theirs (or the doctors). Get him off any drugs that may be effecting him. I had to fight with the nursing home to get my sister off them. They lied to me and her doctor about receiving the doctors order to remove them. Once I did she started walking again and talking. But I truly wish we had gotten her out of there because during the lock down the intentional gross neglect is what led to her death.
You can get people to come to care for your husband right in his own home. There are programs out there like IRIS which will help you pay for services not covered by your insurance. They will pay for caregivers, that includes family. He can decide who he wants and who he does not. Please give him back his life and let his remaining years be good ones.
Wander
The hospice was wonderful and there’s no doubt he lived longer due to them and the great facility he’s in.
In late January he had a massive seizure due to the tumor. He declined quickly and hospice told me to come since he was close to death. Then he rallied and could talk though aphasia made it difficult at times. He loved the birthday party that hospice gave him. Now he’s in decline. Either he’s sleeping or getting restless and is a big fall risk—he frequently falls even though the staff has taken every precaution available. But they can’t place an aide in his room 24/7. The nurses really care about him and are doing their best. He doesn’t speak anymore except sometimes a couple of words in reply. He acknowledges me and his daughter with a smile and “Hey!” But after that we’re not sure he’s even aware of us. He can’t feed himself. Sometimes I wonder if he eats only because the food in is put front of him. Would he know if he was hungry? His hands and arms are very shaky and uncoordinated. He is dead weight so when his brain says to get up obviously he falls. He’s a small guy but it often takes two people got transfer him.
Three weeks ago I was exhausted and depressed after I left and couldn’t bring myself to visit until five days later when I had a care conference with the social worker at the facility. I told her I had hit the bottom of the barrel. She called it caregiver burnout and suggested I and my niece take a week or two off, or more, just let her know. No more calls about falls or med changes, just if he went into further decline. Or suddenly passed. A weight has lifted. This was easier knowing he was in excellent hands. All the staff knew we were very involved with him from the start; they understood how hard it was becoming to visit him.
We are not bad people for not wanting to visit our loved ones in nursing homes. We are exhausted and grieving people. So, no, you are not a bad wife. It’s incredibly hard and sad to watch this formerly bright and accomplished person disintegrate before your very eyes. You have indeed lost him, he just hasn’t died yet. Let yourself start grieving. Go easy on yourself and start your own healing.
As an aside, it really irritates me when people say nursing homes are horrible and no one should place their loved one in one. Just what are people to do? Kill their own health for the sake of someone who has already lived a life? Feel endless guilt and perhaps some resentment because they’re exhausted and can’t think or function anymore? There are good facilities out there. Facilities are rated on the Medicare website. Look up the overall rating and the resident care rating. The more stars the better. Doing my own research and giving my list to the social worker in the hospital or hospice meant they weren’t just looking at a list of local homes. They were looking at our preferences.
A nursing home is where you trust professionals to do what you can not do. At least, that is how I feel about it. I was one person trying to do everything 24/7. They have a whole staff to take care of him and he has improved in lots of ways in their care, for which I am very grateful. If he hadn't let me take him to the doctor, I am sure I would be a widow now as he would have died from the sepsis in his system that we would not have known was there.
The hospital gave me a list with the stars already on it. I chose the home closest to me that had the best rating. I am lucky I live in a small community with a hospital that goes the extra mile to help their patients.
You put it out there as " You have indeed lost him, he just hasn’t died yet." That is exactly how I feel, but it is really hard to tell people that. Thank you so much for understanding.
Hugs,
Wander
you have to get to know the new husband you are married to. I think the more you visit (It does not need to be every day) The new relationship will evolve.
my situation was different because it was my parents. I had to move them into assisted living and their health was so fragile. I became the caretaker and it was so hard for all of us to adjust.
over time we learned to bond in a different way and going to see them became a bit easier.
My parents were a bit difficult and one day it hit me, I. Ant change them but I can change how I react and deal with them. It helped me so much to deal with the changes and help them feel like they were still in charge of their life as much as they were able.
hugs
My husband is different. He is still a sweetheart the majority of the time, but he is often in another world. The staff love him for which I am grateful. I know he won't get any better and that it will progressively get worse. I will be in limbo for years as I won't stop going to visit, but the time between visits may lengthen for my peace of mind.
Thank you.
Wander
I have told my doctor about my stress and sadness and he says that he doesn't like to prescribe meds for that. I have been thinking about going to a different doctor, but I hate to add any expense to the already huge medical bills I already have from my surgery, tests, doctor visits from the last year.
I know he is in the best place for him. But I am still very sad for him. I am lonely too, but I do have quilting friends who have been chatting with me daily and we video chat a couple of times a week as well. I am making wheel chair quilts that my husband requested I make for the people that like the quilts I made for him that are on his bed and his wheel chair quilt. So I have something to keep me busy. My husband will enjoy giving them to his friends there when I get them finished. I have 40 tops made now and just need to get them quilted, labeled so they can write their names on it and bound to take up to him. It takes me a while. By the time I finish them, it will either be high summer or winter again.
Thank you.
Wander
Wander
Parkinson's disease does cause personality changes along with the delusions in the latter stages. Try to find glimmers of the man you remember and love in the man he is now - they are there. At this point in his disease process with Parkinson's, he needs to have care through a skilled care facility. Try to help him enjoy the life he has by bringing whatever joy you through activities that are similar to ones he enjoyed before his health failures. If he was an engineer, give him puzzles to solve and things to tinker with that have large parts. If he loves to create, do art and crafts with him. If he loved music, play his favorites (sing along?).
Wander
I know how it feels to walk in that room and see hubby talk to you like he was spouting pure nonsense. Mike loses his oxygen in bed and 'goes away' for a few days. I have raised hell with the home. Mike is the only friend and relative I have left! When he is 'with it' we have wonderful talks and I have put a fuss up to live with him but I don't qualify due to good health. I have a bad heart and spinal stenosis but can still live on my own.
I'm worried for you though. If you stop seeing your hubby, your feelings of guilt may surface something horrible!
I would suggest if it gets too hard on you to visit every other day or three days a week. That way you won't burn out. Get out and mingle with friends if you can. Take up a hobby or do something you always wanted to when you were on your own. I hope this helps and God Bless You! You truly are one of the rare ones.
Temper :}
Wander