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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.

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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.
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Wanderdragon Apr 2022
Thank you so much for the link and the advice. I appreciate you. HUGS<

Wander
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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.
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Wanderdragon Apr 2022
Thank you so much. I appreciate your reply and advice. Hugs,

Wander
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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.
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PatsyN Apr 2022
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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))
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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.
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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
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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".
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Wanderdragon Apr 2022
Yes, I read that too. Thank you. :)
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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.
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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
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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.
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Wanderdragon Apr 2022
Thank you. :) HUGS<
Wander
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The best gift of love is to let him go.
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My late father had Parkinson's, and I can empathize with you. He got so bad he thought I was his mean sister instead of his daughter. His other real sister tried to tear the family apart through the court system. Mom had just dropped dead unexpectedly from a heart attack in part because she was trying to care for him at home, and we had to tell him 3 times in our deep grief, before he said he believed us. I don't think he ever did, but when he was put into a nursing home - dr. said I'd kill him if I tried to keep him home any longer - and Mom didn't come to see him each day as she would have, he finally realized she was gone and I believe he decided he didn't want to live anymore. He died after 3 months in the home and it was a blessing, as the pain meds didn't work anymore on his cancer, which had spread throughout his body. You do feel like you've lost them before they go - you grieve partly in advance - Dad took 5 years to let go. As for a PhD., I have learned at age 71 that advanced degrees and IQ have little to nothing to do with how much common sense and awareness of others' needs and even existence, anyone has. So don't judge by the degrees he's obtained. That's mostly hard work anyway. This is a tough tie, but it will pass. My thoughts and prayers are with you.KBH
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I am so sorry and I can’t imagine all the worry you’ve had for so many years.

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.
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Beckylee Apr 2022
I agree. I have reduced my time to check on him and make sure he is clean, warm, properly medicated and taken care of. He doesn’t usually respond but for a minute he knows I’m there. It’s more for me than him.
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Sit still for a few minutes and try to think how you would feel if you stopped going to see him.

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?
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Layne7 Apr 2022
This is really helpful advice. My mother is in AL with congestive heart failure, vascular dementia, and a host of other problems. Communicating with her is very difficult as she has trouble processing auditory information even with hearing aides. Visits are challenging, exhausting, and heartbreaking. I have found a few things that help. I also set a timer on my phone for the length of stay I have planned. The facility has a beautiful patio area, and visits seem to go better if I wheel her out there to watch the hummingbirds instead of trying to visit in her room. Sometimes I take my dog to visit her. He hops on the bed and cuddles with her, which is a great source of comfort as well as providing a focus for the visit. Other times I set a goal for the visit- going through her clothes to see what she needs, cleaning out a drawer, etc. Visits are still very hard for me, but I know they bring her joy at least for the time she remembers I was there. I have found the visits are easier on me if they have a focus other than my sadness over her condition.
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What you are feeling is completely normal. I am in the same situation being that my husband is now in the Veterans nursing center, due to advanced dementia/Alzheimer’s and vascular dementia. I won’t get into all the details but I took care of him as long as I possibly could until it started to affect my health and I could no longer do it physically. My heart is broken and it breaks again every time I go visit him in the facility. He is also losing weight and has lost his desire to eat other than sweets. He knows my voice and he still holds my hand but he no longer knows that I’m his wife. It’s a devastating illness. My heart goes out to you and you need to take care of yourself now because like me we are on our own. I feel the pool to go up there and visit him just about every other day but when I leave there I cannot stop crying. I know in my heart that once I leave he totally forgets that I was ever there. My fear is that he’ll think I abandoned him which I would never do. We’ve been married 52 years and we were high school sweethearts.He’s the love of my life and now I have to move forward without him because I’ve already lost him mentally and like your husband he’s no longer the same man. I’m really frightened for my future and I don’t wanna burden my two daughters even though I’m thankful I have them. Be kind to yourself. My thoughts and prayers are with you💜🙏
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deedee2travel Apr 2022
When I read reply, I felt as though I could have written it. I, too, have a husband with dementia but he is not in a nursing home, yet. I know that one day I will have to put him in one and try to go on with what life I have left. I know I have lost him mentally and he is not the same man I married. I feel about my future like you do, what am I going to without him? I, also, do not want to burden my two children and become a like a third wheel in their lives. When I visit them, I feel as though I don't belong. I My house is too big to stay by myself and the thought of moving is overwhelming. Where am I going to go and what am I going to do? We have been married 54 years and loved to travel. I would give everything I owned to travel one more time with him, but we can't. For now, I just take life day by day. I try not to get mad when he pees or poos on himself and when people ask me, "how do you do it?" my answer is, "I am his wife, who would not take care of the love of their life?". I understand your pain.
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Yes, you have lost the husband you used to have, but you still have whoever he is now. Take him at face value. Be present for whoever he is at the moment.
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.
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Wanderdragon Apr 2022
Thank you. I did what I thought was a good job until I broke my arm. Then he needed more than I could do. The nursing home is doing a good job.

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
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My husband is in skilled nursing and has Parkinson’s with Lewy Body Dementia. I don’t believe I could have lasted as long as you before putting him in the nursing facility. I hate going to the home as well. I hate watching him in that state as well. He now has very bad bedsores, as he is so stiff and cannot be moved without great pain. Of course he is in diapers. It is like a horror movie being forced to watch the one you love suffer day after day and you cannot help. I feel like this is an endless nightmare 🥲
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OnlyChild4Daddy Apr 2022
I would contact social worker that’s on staff to get something done about the bed sores. That is a type of neglect and head nurse needs to be conferenced, administrator, and his doctor. His stiffness is suppose to be worked out by having physical therapy each week. If things don’t change, then a new skilled nursing facility needs to found ASAP.
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I hear you on this! What a time you’ve both had! As an outsider to your situation, I see that he is in the best place possible for this time in his life. It sounds like he is getting the best care possible. I can assure you that this is a blessing.

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.
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Wanderdragon Apr 2022
Thank you for your kind words. I have always done my best for him, just as he has always done his best for me. I don't plan on not going to see him, but I dread it each time and it makes me so sad to see him like that. I am stretching out my time between visits to give myself some breathing room, but I will always go see him. :) At first, I was going all day every day, but it was wearing me out. I am going every other day or every 3 days now. :)

hugs,

Wander

Hugs,
Wander
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My daddy is also in Tennessee, because our state had no placement for combative patients.
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Wanderdragon Apr 2022
Thankfully, my husband is not combative. I hope that your daddy gets the help he needs.

Hugs,

Wander
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Hello. I agree with freqflyer.

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.
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Wanderdragon Apr 2022
Thank you for your words. :)

Wander
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My mother lived for 12 years in a nursing home receiving full care until she passed at nearly 100. Dementia left her unable to identify me. BUT, she know I was someone special in her life and was happy to see me. It was tough watching her decline but we formed a new kind of relationship. And, in her dementia she became more loving than she had been. The visits also provided me with first hand information about her care. Guilt has been defined as good intentions we never had so when I experience it I think about how to revise my “intentions” not as a reason to not visit.
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.
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Wanderdragon Apr 2022
Thank you for your thoughts.

Wander
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It's very hard to understand someone else's situation and feelings if we have not walked in their shoes. But I nursed my husband for many years through multiple medical issues and finally through Alzheimer's. It is devastating to watch someone you have loved and been married to for 67 wonderful years slowly disappear into dementia. He, too was very smart, and had a long career as a research director, but by the end could not talk much, could not convey his feelings, was not much interested in anything going on around him, and mostly wanted to just doze and be left alone. The physical side of his care was very hard, with incontinence, and sometimes lack of cooperation, but I just did it every day because I loved him. He knew who I was most of the time, and tho' he didn't express it often, he understood I was taking care of him. He would ask me, " Why do you take such good care of me?" Because I love you, I would say.
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.
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Wanderdragon Apr 2022
Thank you for your insight. I appreciate your thoughts on the matter.

Wander
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What kind of drugs do they have your husband on? Do you realize that this could be what is causing him to fall. Avoid sleeping pills and anxiety drugs! They put my sister on those when she was FORCED into a nursing home. She came in walking and talking and within a week was constantly falling, could no longer speak or even sit in a chair without slumping and falling over.

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.
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lealonnie1 Apr 2022
Did you READ the OPs post that her DH was falling at HOME a lot due to PARKINSON'S, and that's WHY he was placed to begin with? Advice such as this is not helpful at all, but hurtful.
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Ii would go see my Mom at the NH for a few hours and then go see a therapist afterwards - it did really help me .
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Wanderdragon Apr 2022
Thank you for your thoughts.

Wander
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It’s terribly hard to visit someone who, once smart, bright and very productive, now is simply a different person who can’t think or reason. Last year my 66 year old brother was diagnosed with glioblastoma which has a very poor prognosis. Neither I or his 23 year old daughter could take care of him. I decided against treatment. Due to the location of the he had lost the components that make up one’s personality and ability to function independently.

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.
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Wanderdragon Apr 2022
Thank you so much for this reply. I hope that your brother has no pain and that he is at peace in his mind like my husband seems to be. I will pray that you get the rest and recuperation that you need as well. :) Sending you hugs.

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
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I cant imagine the loss you feel. He is not who he was. Your feelings are normal and it will take time to sort them out.

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
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Wanderdragon Apr 2022
I have parents like that. I used to argue with them, but after I decided that it wasn't going to change their minds and it was giving me a headache every time I saw them. My husband and I agreed that I should just agree with them and then do what I want. It is a lot less stressful dealing with them.

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
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This is so sad. I wish you weren’t going through it. But you are, and that’s the reality. Comfort yourself by knowing he’s in the best place for him. Realize that no matter how many or few times you visit, the situation won’t change. Replace some of the visits with phone calls. Try to live the best life for YOU under these circumstances. Tell your doctor how depressed you are and get a prescription for an antidepressant, which will definitely help. You don’t have to give up on yourself. He’d want you to live as well as you can, wouldn’t he?
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Wanderdragon Apr 2022
Yes, my husband always wanted me to be happy. That was the most wonderful thing about him. If it made me happy, it made him happy.

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
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I'd say maybe go visit him every couple of weeks.
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Wanderdragon Apr 2022
Thanks. I have thought about just going once a week and see how that makes me feel. :) Hugs,
Wander
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Sweet lady, you have been a tremendous help to your husband for years and years. You have stressed that he would not go to a doctor to get his problems evaluated or treated. Most of what you wrote is the natural consequences of not having his health problems treated. You are not to blame. You have not been bad.

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?).
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Wanderdragon Apr 2022
Thanks. He was a computer consultant and was always on the computer at home. I tried to take his laptop and a kindle up there, but he insisted that I take them home. I have asked several times if he wanted me to bring them up there and he says no. His fingers don't work well any more so that might be part of why he doesn't want it there and he might not be able to comprehend what he is doing on it any more. I don't know. He has his bible which makes him happy and he has been watching TV which he never did at home. So, as long as he seems to be happy, I am good with leaving it at home. He was into classical music so no words. I offered to bring my cd player up there, but he doesn't want it. I took it up on Christmas to listen to Christmas music, but he told me to take it home. I just go visit, take him snacks, tell him what I have been doing and about my quilting and friends, the dogs and cats and the neighbors and anything else I can think of to talk about.
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Wanderdragon: Dear woman, you are a STELLAR individual. What you are enduring is extremely difficult. If it would help you, set a limit to the number of hours that you visit him as perhaps you must rather than have an open ended duration of time. It is important for you to visit him. Hugs and love sent.
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Wanderdragon Apr 2022
Thank you. :) hugs,
Wander
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Oh hon, you definately are NOT a bad wife! Good grief. It sounds like you both have been through hell and I for one, salute you. I know how you feel. I had to put my husband, who was my rock, in a nursing home and my heart was broken. Not only that but I seemed to lose it for a bit and my nurse and friend told me I had lost my purpose. I had been caring for Mike for almost two years but didn't have the insane trip you had. Geez, my hat is off to you!
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 :}
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Wanderdragon Apr 2022
Thank you. Please don't worry. I am not going to stop seeing him. I have to take him snacks as he is a snacker and I am not going to let him go without. The nursing home is good about giving him stuff, but he likes different things and I take those to him. :) He was doing pretty good when I saw him day before yesterday. I am planning on going again tomorrow. :) Hugs,
Wander
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It is hard but you absolutely cannot blame yourself for any of it. You’ve enjoyed good times and wonderful memories with him in your marriage. Cherish those memories. Some things in life such as our final season, cannot be changed or repaired. While it is incredibly saddening, take each day at a time, loving the man you married.
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