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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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I hear you. I dislike NH.
My husband too has worse and worse progression of PD,
it seems like every week there is something new, but with him is physical symptoms. Cognitively he remains unchanged, also extremely smart, but his interests are diminishing as he is getting tired easily, increase in medication and additional strong meds for pain make him sleepy, day and night.
He tried and tried, PT, every treatment, diagnosed in 2015, I suspect it was there already for maybe 5 years before diagnosis. I went thru trying to do everything to now feeling more of taking care of myself and getting my life back and interesting, realizing with this horrible disease there is no cure and everything gets worse. So I am at the point of anticipatory grieving, it does not mean somebody is dying immediately, although possibility is greater with each stage, I am coming to acceptance. One professional told me to distance myself.
Hope you can find your coping skills too.
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HATE TO SAY IT, BUT YOU'RE BEING VERY SELFISH. THERE ARE PEOPLE THAT CAN'T BARE TO SEE THEIR LOVED ONES SICK....HOW CAN YOU ABANDON YOUR HUSBAND? WHEN I CARE OR GO TO SEE SOMEONE
THAT I CARE ABOUT....IT'S NOT ABOUT ME....I DO IT FOR THEM, THEM,
THEM.
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We all dislike visiting the nursing home. We do it because it makes them happy. Our loved ones are not the same as they were before, and they never will be.

Try to laugh with them as much as you can. Do enjoyable things like games and puzzles. Bring your husband's favorite music. Tell him stories of old, good memories.

We are with you and we understand your pain.
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After all you two have been through, it’s no wonder why you’re 😢 sad. Now that nicer weather is coming, go sit outside with him. I’m sure SNF put him in wheelchair. Talk to Dietitian about his diet, & getting him protein drink. Maybe bring books or newspapers for him to read. Hugs 🤗
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We mostly go to the nursing home to visit our loved ones for THEM.

Can you imagine how lonely he must feel. Can't you give a part of you up
to make him smile, or at least to feel cared for? I realize you went thru a lot
with him...but imagine being in the nursing home yourself and not being
visited because people only thought of the way they felt?

It would be wonderful of you to go visit your husband. Even though he
doesn't seem like the man you married....he is!!!!!
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lealonnie1 Apr 2022
The OP did NOT say she ISN'T going to visit him! She says, "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"
Before leaving guilt inducing remarks, you should read what is actually said! If you are 'empathetic', try leaving empathetic comments!
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This is who your husband is NOW. Accept. the NOW for whatever it is as it evelves.
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I had to adjust my thinking and my mother became a nice, mildly nutty lady I'd visit in the memory care instead of my mother. She bore little resemblance to my mother physically or in personality, and it became difficult to care about her as my mother. That's when I just consciously made the decision to visit that lady and not focus on who she had been and what I'd lost. I just wanted to brighten her day a little whenever possible, so that's what I did.

That shift in my mindset really helped me the last few months of Mom's life, because she just became less and less a person I knew. It's what got me through to the end, and I was glad to have not given up on her.

You'll realize later after he's gone that the husband you loved "died" a long time before his body died, and you'll understand that you're going through your grief now while he's still on the earth. It's a very strange feeling, because you feel like proper grief is supposed to start when the person dies. I still don't feel like I properly grieved my mother even though she died last July. However, my brother wisely pointed out that she'd been gone for years and we'd grieved a bit every day already.

Try not to dwell on what's gone and live in the moment as much as you can. It isn't the way it was, but it's the way it is and there's value in that as well.
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In reading other answers including yours, you mentioned he liked music. My brother became incapable of using a phone or a laptop. His love was classic rock. I got him an Alexa. I’ve never seen him ask Alexa for music but the staff and hospice ask Alexa for the Beatles or the Eagles or whoever. Hospice brought a guitarist early in his stay. He opened up and started talking, laughing and smiling, and the next time his daughter brought his guitar to play with the musician. We found music relaxed him and made him happy and cooperative. The Alexa was totally worth it. The staff there cares enough to keep the music going.
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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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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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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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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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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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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 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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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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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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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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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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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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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 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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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 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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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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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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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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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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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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The best gift of love is to let him go.
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