I am having a hard time coping, too. This week my husband might be moving to a home about 5 min. away. I am very thankful I found that. It has been a long route. My husband had a stroke in 2006. He was 59 and now is 71. We are the same age. Up to now, I had enough help to keep him at home. I have moved twice in 2 years because of his needs and Medicaid "spend down" requirements. Mostly I have been OK, but now I am crying way too often. Obviously this is getting to me. Moving twice is plenty of stress for anyone. I did this mostly alone. People helped an hour here and an hour there. But mostly it was up to me. I cannot imagine not living with him. He is extremely dependent on me emotionally. He finally years ago accepted the help of aides. He did not want that either. I have been lately letting him see the toll it is taking on me. I am crying more often, showing him my fatigue and heavy breathing and body pain when I transfer him and dress/undress/diaper him. He is labeled a "two person assist." He is heavy and can't use his right side . That is the reason many aides won't come here. It is impossible to get 2 aides here at home. 12 years at home I think is pretty good. It is time. I have accepted this decision. But it does break my heart. Our daughter (age 35) thinks this will kill him. Lovely. My opinion is that people are as happy as they decide to be. If he does down hill due to his unwillingness to accept this, I can't do much about that. Kind of as a joke, I might decorate his room with grumpy old men posters.
Thanks for listening, chris
My best wishes to you all and your tough situations. I am doing this now with the help of one (handicapped) aide. She is here 6 mornings a week. I do Sundays and all evenings.
My husband just started living in a nursing home partly due to early Alzheimers. I have problems with rheumatoid arthritis and I'm not able to take care of him at home. He fell twice in one week, gets confused and hallucinates, mostly at night. He is very depressed about being there and wants to come home. It breaks my heart. I miss him. I don't really agree with the idea of "people are as happy as they decide to be." Everyone is different and it can be pretty hard to give up all of your independence to strangers. When you eat, when you sleep, when you can bathe and when you can use the bathroom. Some of these strangers aren't very kind or patient and shouldn't be in that line of work. I worked in a nursing home so I do know what I'm talking about. Sometimes living in a nursing home is too much for people and they get depressed and give up. My husband is depressed and angry and sad and is still fighting, thank God. I don't think that I would be able to fight or just make the best of it for very long. How would you handle it? Honestly, could you just decide to be happy? I know that it's probably the best and safest place for both of our husbands, but it still just makes me so sad that this is their life now and they have no control over it.
We had to put my dad (92) in a NH this past March. I truly believe had we not, that my mother would not be alive today. He was slowly killing her. Yelling and screaming at her all the time... throwing things... threatening to kill her (and us) She looked like death. I think we are all getting used to the fact that he has dementia and is where he needs to be... but we never wanted to put him there. But no way, could we take care of him anymore. He was too violent. My mother did the best she could. It's so sad that it has to end this way. Married 61 years.
I'm so glad I found this forum to know we are not alone.
Sallies, you did the very best for your husband, you chose to keep him safe and cared for. I’m sure on some level he knew that, or understands it fully now. He was blessed to have you looking out for him. I wish you the best
I came across this forum because I was searching for help in getting over my guilt for putting my 84 year old husband into a nursing home. He was diagnosed with age related dementia 4 years ago and had started wandering out of the house around the neighborhood. Since I had no one to help me care for him - my stepchildren do not live in our city - I grew increasingly worried that something bad could happen to him. He was also easily agitated and would clinch his fists when he got angry with me. The day I took him to the NH was the worst day of my life. He has now passed on - after 6 months in the nursing home. I am overcome with guilt that I did not keep him with me those last 6 months. I think I could have managed another 6 months of keeping him safe. He did not understand why he couldn't go home with me. Reading the posts on this site has helped me to realize that I must now move on with my life knowing that I did all I could do for him and not beat myself up too badly. I don't think, in his right mind, he would want that for me. So even though this is not an answer to a particular post. I want all of you to know you have helped me with your comments. Thank you.
I am going through this now. I have an appointment at the nursing home tomorrow, and the Dr is coming to the house on Wednesday to speak to my husband. He had a Hemorrhagic stroke in april 2016, He has limited speech, is muscles are getting weaker, from a inherited degenerative disease, he has a feeding tube for both liquids and formula. He is also suffering vascular dementia. The dementia part doesn't seem that bad yet, but I know it will get worse with time. I have finally reached the point where I cant look after him anymore and my health is suffering. It has been the hardest decision that I have ever made, the pain and guilt is excruciating but it has to be done. Thank you for your posts... I am so glad I am not on my own.
thankyou for sharing your stories I cared for my husbsnd after a stroke to his brain in Nov 2016 After 5 months of caring at home I was so exhausted and stressed I had a mild tia followed by a suspected heart attack and my blood pressure was up by 40 percent On my Drs advice I had my husband placed in hostel care as he was becoming progressively less mobile and his emotional health had deteriorated He hated me for this and got himself discharged and a friend brought him home without any consultation with me or even a phone call from the care facility He then had 2 severe falls at home resulting in a bleed to his brain and many weeks in hospital and then another fall causing a broken hip and shoulder This led to pallative care and his death in August 2017 I have times if great remorse at having to put him in care and blame myself for his unhappiness in not being at home in my care So your posrs have helped me work thru my grief and guilt
My hubby had a brain aneurysm end of feb..he's been in hospital ever since..now it's time for a nursing home..he knows me unlike others but won't recall if I had been there to visit only hours ago..he is only 64.. can't walk and will not progress to anything other than processed food..we retired 3 years ago..he worked his ass off for the both of us to retire as I am 7 years younger..I am devastated and love him so much
It is so hard to let the person go, it isn't guilt with me just sadness, sometimes my husband doesn't know who I am, and then another day he does, that gets easier and I try to make a joke out of it. The trouble is other people think you should pick the pieces of your own life up and everything will be wonderful, but of course it isn't like that. The old adage a day at a time. I'm struggling, but so are others, you are grieving for your husband who has long since gone, that is the truth of it. Good luck to both of us and anyone else who is struggling.
I totally understand your feeling of sadness. I feel the same way. My husband had been having short term memory loss about 3 years ago. Nothing major at first. He started getting more confused, especially at night, hallucinating (dead body on the kitchen floor) He was losing some of his strength due to severe arthritis, he's 85. I also have arthritis and nerve issues in my back, neck and legs. He fell twice and I couldn't get him up. The first time I had to call the EMTs just to get him up. The second time, my son was home and lifted him. He seemed to be more confused so he went to the hospital. Everything checked out ok except they said that he has Alzheimers. He went from the hospital to a rehab facility and the to their long term care. He's so upset with me because he thinks that I don't want to take him home. He cried and begged me to let him come home. It breaks my heat. I'm only 63 and I should have been able to take care of him but because of my own health problems I can't safely do it. I do understand your sadness and loneliness. This wasn't the way we thought our lives would go.
My husband of 50 years went to live in a dementia unit two months ago. This has been so hard. I could not do the 24/7 anymore and I was getting sick. I have taken care of him for three years as he has gone downhill, and this September he must have had another series of strokes because I knew I could not do this anymore. He has vascular dementia. I am having such a time coping because he has times of aggression in the home and he has hit caregivers. He also has sexual issues going on with a couple of the women and I cannot handle this. This is not him and I know that, but I never expected to be getting these kinds of calls. One medication stopped the behaviors but then our doctor changed it and they came back. We have had a great marriage and celelbrated our 50th and having it end like this is breaking my heart.
sharhawk65, I just want to give you a warm hug! This is so very hard. But your reactions seem very normal to me. Caregivers experience a kind of mourning with each loss their loved ones experience, and being placed in a care center is a huge milestone due to losses.
One difficulty with this kind of mourning is that no one is sending condolence cards, no one is bringing casseroles, no one is comforting you in this time of grief. Also, there are no obligatory tasks to keep you going -- you aren't planning a memorial service or sending out thank-you cards. Society has evolved some practices to help us mourn a death, but we don't really know how to this kind of loss.
It has scarcely been two weeks since your dear husband's placement. Be kind to yourself. Allow yourself to grieve. Don't expect the creative fire to come back tomorrow. These things take time.
In addition to making yourself grocery shop (who cares if it is in the afternoon?) I thing the one thing that might be worth pushing yourself to do is visit your husband. He likes it. You enjoy that he is still pleasant. And you'll feel less guilty by visiting often. I'm sure he won't care if you are in sweats (but you might want to brush your teeth and comb your hair!)
Mourning is not the same thing as depression, although some of the symptoms can be the same. Perhaps what you are experiencing is simply "normal" under the circumstances. But I suggest you see a mental health counselor or talk about your symptoms with your PCP. Appointment can be hard to get so I suggest you make an appointment now. If you are feeling better as the appointment day approaches you can cancel the appointment, but if you are still feeling so low it will be good to have that appointment.
Hug your dog. Find some good music to play in the background.
I placed my husband in a lovely dedicated memory care facility Dec. 1st, '16. He has always been good natured so I am pleased that behavior continues now. However, I took care of h I'm for 11 years, until July 16th, '15. I was diagnosed with A-Fib June 21, '16. The cardiologist said, I must place Wayne in a memory care of I may not live to see Christmas last year. After 11 months, he appeared to be much better. I moved him out and rented a home and we moved in July 29th. Not a good idea! In the last 5 months, I have been in the ER 2X. Cardiologist said, this time I must place him in a facility because I now have a weak heart valve. So, I did this and the place is wonderful. I tried, but caring for him was too stressful for my heart. Finally, I can sleep as long as I wish and eat whenever I wish. I am depressed, I know. I just wear old sweats, socks, don't bathe, brush my teeth and sometimes, don't even comb my hair. I am thankful for having a sweet dog, who is wonderful, benign company. I tried reading and find I kept re-reading the same paragraph, so closed the book. I sleep well, but do as little as possible. Once a week I grocery shop, but it takes me until mid afternoon to get dressed and go. I am a professional artist who has painted around the world, but I just don't seem to have that creative fire in me right now. I sure wonder when I will straighten up. I don't have a circle of friends, never had time to join a club, nor really wanted to. My college friends are not nearby. I do email daily. That keeps my grey matter stimulated, at least. I don't have much interest in visiting him and feel some guilt about that. When I do visit, (he's 3 mi. from here) he's always pleased, but never upset, so I am fortunate. Thanks for the space to comment.
My husband of 30+ years now thinks I am cheating on him over and over again, leaving him, moving to a new house, I threw away all our years, etc. I t breaks my heart. I am going to move him to a memory care facility, but the guilt is tearing me up. I have lost the man I married, but I need to do the safe thing for him. He had a stroke 2 months ago and all is accelerated now. He is now in the hospital with behavior issues. How do I tell him that he is going to live in a facility?
My husband of 30+ years now thinks I am cheating on him over and over again, leaving him, moving to a new house, I threw away all our years, etc. I t breaks my heart. I am going to move him to a memory care facility, but the guilt is tearing me up. I have lost the man I married, but I need to do the safe thing for him. He had a stroke 2 months ago and all is accelerated now. He is now in the hospital with behavior issues. How do I tell him that he is going to live in a facility?
I am feeling such relief that people other than myself are now caring for my spouse. He is quite a bit older than me. After 30 years of marriage and the last eight having been a caregiver/patient type of relationship, I was so exhausted from all the care, working full time, making almost weekly doctor appointments, counting meds, and him being so agitated and aggressive with his dementia. He is forever negative and blames me for all his misfortune. I am so run down from the stress and the lack of appreciation.....it really was two people's health that had to be considered and I had given sooooo much time, effort, and love, that my bank was completed bankrupt. Something had to change......some days I feel so guilty.....I struggle with the decision, but people have to know that this disease hurts MANY lives, not just the patients'. I pray for everyone going through this......there aren't any perfect answers to these situations.
Yes, MickeyS, it's time. With dementia, there often does come a time when we, alone can't manage. Sometimes this move is for the caregiver's safety as well as that of the ill person. Work with the doctor to place him in care. Then you can go back to being his support without having to worry so much.
Please keep us updated on how you are doing. Carol
carolmorgan, putting a spouse in a care center has got to be one of the most excruciating experiences of caregiving. I'm not surprised that you feel like you failed him. That is human nature -- we want so much to help and to "fix" our loved ones that it feels like if we just tried harder or just had the magic answer we should be able to do it. The truth is that sometimes the best we can do for them is to turn them over to a whole team of people in a good environment. That is the truth, but it sometimes is hard to believe, especially when they are doing well. On a good day, it is easy to second-guess whether you could/should have been able to make it work at home. You did what was best. Take credit for that, and be proud.
my husband who is a lot older than myself had a stroke with a bleed which left him talking away but not making sense, I had him home for 12days and had to phone numerous time to his sons for help with situations that were out of control. I had to phone for ambulance early hours of the morning because he went out of control. A further month in hospital followed by a nursing home, it was the most painful decision ,I felt I had failed him. Now two months on he hopefully has settled and is showing signs of at peace, not so agitated. He has had moments at the nursing home which to be honest helped me, knowing that I had done the right thing. When we have really good days I feel should I have him home, but I have to remind myself of how things were b,y reading a few notes I had written down before he had the last stroke which nature has a way of blocking those memories out. I did do the right thing and my husband has a quality of life again at the age of 87 and I am allowed into it.
MickeyS, I hope you are working with a specialist very familiar with LBD. Your husband's behaviors are not unusual. You may need to consider placing your husband, but before taking that step discuss his behavior in detail with his dementia doctor. It is possible that medications will help him be more calm and less prone to violent outbreaks. That is not a certainty but it is a possibility worth checking. If he is not now being seen by a specialist very familiar with LBD, I urge you to find one. That can make a huge difference in the kind of treatment plan he has.
My husband has Lewy Body dementia and at times he get violent. He wants to leave but I'd course it's locked. He get upset and kicks the door and the patio door. He says that he want to break the door. Today want a horrible day al day. He got angered cause he couldn't leave stepped on a plastic glass and broke it and broke one of our blinds. Every so often he tries to leave and gets angered when he can't and starts to kick the doors. Is this common? Is it time to put him in a nursing home?
The patient that is being suffering from this disease i can say you are suffering from a very hard time. I have seen many people who are suffering from this disease and they have become more aggressive than they were in the first and yes at a certain stage they they act like they really mean it but this is due to the dementia.... As far as i have known this disease has no cure yet... And dear don't guilt yourself if he wants to come home and you don't want to... He needs more care and proper attention which you can not provide him so that's why let him stay there for proper care and treatment.
If your husband has a progressive dementia, vilolets515, he will not get well. "Progressive" means the disease gets worse over time. My husband has Lewy Body Dementia, and it is a very hard truth to accept that he will never get well. Much research is going on world-wide, and perhaps some day a true cure and even a prevention may be possible, but now all we can do is treat the symptoms, and work to make the dementia patient safe and comfortable and perhaps even happy.
In a safe, comfortable setting, and perhaps with the help of appropriate medications, your husband's quality of life may improve. That doesn't mean the disease is getting better ... but that the people around him are getting better at treating him. That is a good thing, and greatly to be desired and worked for.
I don't know whether he understood exactly who you are when he saw you in the NH, but he obviously knew you were a good person, and a person he was glad to see. You can continue to be that for him, and to be his advocate for the best possible care, no matter what the disease does to him.
My heart goes out to you. This is a terrible journey.
By the way, early in my husband's dementia, he constantly wanted to go home. He'd pack his bag and wait by the door. He'd ask if it was time to leave yet. He'd ask when the cab was coming. Over and over and over he'd tell me he wanted to go home. And he was home! He was in the house we'd lived in together for the past 14 years. He slept in his own bed, watched his familiar television set, etc. etc. So the fact that someone with dementia wants to go "home" may not mean exactly what you would mean if you said it.
I keep thinking maybe my husband will get betterHe has demntia and can get really agitated at times . Is this a possibility ? He is in the nursing home now.
We just did put my husband in a nursing home today ,after a weekand a half in the hospital for dementia. I was their when the brought him in to the nursing home . His face lit up when he saw me and he smiled but I'm not sure he really knew me. This really hurts. How do I handle this?
Violets, The fact that he wants to go home is almost universal. Two things to remember. One is that you really cannot safely take care of him at home alone, so there is no option. The other is that you can be a better wife to him if you aren't totally exhausted by all of his care needs. You can visit him somewhat refreshed because you can have a life of your own, and you can get some rest. One more thing to remember, depending on his stage of dementia, is that he may actually want to return to a childhood home he remembers. We don't always know what they mean when they say "home." Please don't let guilt get to you. Remember that you have done your best for him and that you still are. He needs more care than you can give alone. Keep in touch with us. Other caregivers will really understand. Carol
My husband had a stroke in 2006. He was 59 and now is 71. We are the same age. Up to now, I had enough help to keep him at home. I have moved twice in 2 years because of his needs and Medicaid "spend down" requirements. Mostly I have been OK, but now I am crying way too often. Obviously this is getting to me. Moving twice is plenty of stress for anyone. I did this mostly alone. People helped an hour here and an hour there. But mostly it was up to me.
I cannot imagine not living with him. He is extremely dependent on me emotionally. He finally years ago accepted the help of aides. He did not want that either.
I have been lately letting him see the toll it is taking on me. I am crying more often, showing him my fatigue and heavy breathing and body pain when I transfer him and dress/undress/diaper him.
He is labeled a "two person assist." He is heavy and can't use his right side . That is the reason many aides won't come here. It is impossible to get 2 aides here at home. 12 years at home I think is pretty good. It is time. I have accepted this decision. But it does break my heart. Our daughter (age 35) thinks this will kill him. Lovely. My opinion is that people are as happy as they decide to be. If he does down hill due to his unwillingness to accept this, I can't do much about that. Kind of as a joke, I might decorate his room with grumpy old men posters.
Thanks for listening, chris
My best wishes to you all and your tough situations.
I am doing this now with the help of one (handicapped) aide. She is here 6 mornings a week. I do Sundays and all evenings.
I'm so glad I found this forum to know we are not alone.
It has been the hardest decision that I have ever made, the pain and guilt is excruciating but it has to be done. Thank you for your posts... I am so glad I am not on my own.
One difficulty with this kind of mourning is that no one is sending condolence cards, no one is bringing casseroles, no one is comforting you in this time of grief. Also, there are no obligatory tasks to keep you going -- you aren't planning a memorial service or sending out thank-you cards. Society has evolved some practices to help us mourn a death, but we don't really know how to this kind of loss.
It has scarcely been two weeks since your dear husband's placement. Be kind to yourself. Allow yourself to grieve. Don't expect the creative fire to come back tomorrow. These things take time.
In addition to making yourself grocery shop (who cares if it is in the afternoon?) I thing the one thing that might be worth pushing yourself to do is visit your husband. He likes it. You enjoy that he is still pleasant. And you'll feel less guilty by visiting often. I'm sure he won't care if you are in sweats (but you might want to brush your teeth and comb your hair!)
Mourning is not the same thing as depression, although some of the symptoms can be the same. Perhaps what you are experiencing is simply "normal" under the circumstances. But I suggest you see a mental health counselor or talk about your symptoms with your PCP. Appointment can be hard to get so I suggest you make an appointment now. If you are feeling better as the appointment day approaches you can cancel the appointment, but if you are still feeling so low it will be good to have that appointment.
Hug your dog. Find some good music to play in the background.
I am a professional artist who has painted around the world, but I just don't seem to have that creative fire in me right now. I sure wonder when I will straighten up. I don't have a circle of friends, never had time to join a club, nor really wanted to. My college friends are not nearby. I do email daily. That keeps my grey matter stimulated, at least. I don't have much interest in visiting him and feel some guilt about that. When I do visit, (he's 3 mi. from here) he's always pleased, but never upset, so I am fortunate. Thanks for the space to comment.
Please keep us updated on how you are doing.
Carol
In a safe, comfortable setting, and perhaps with the help of appropriate medications, your husband's quality of life may improve. That doesn't mean the disease is getting better ... but that the people around him are getting better at treating him. That is a good thing, and greatly to be desired and worked for.
I don't know whether he understood exactly who you are when he saw you in the NH, but he obviously knew you were a good person, and a person he was glad to see. You can continue to be that for him, and to be his advocate for the best possible care, no matter what the disease does to him.
My heart goes out to you. This is a terrible journey.
By the way, early in my husband's dementia, he constantly wanted to go home. He'd pack his bag and wait by the door. He'd ask if it was time to leave yet. He'd ask when the cab was coming. Over and over and over he'd tell me he wanted to go home. And he was home! He was in the house we'd lived in together for the past 14 years. He slept in his own bed, watched his familiar television set, etc. etc. So the fact that someone with dementia wants to go "home" may not mean exactly what you would mean if you said it.
The fact that he wants to go home is almost universal. Two things to remember. One is that you really cannot safely take care of him at home alone, so there is no option. The other is that you can be a better wife to him if you aren't totally exhausted by all of his care needs. You can visit him somewhat refreshed because you can have a life of your own, and you can get some rest.
One more thing to remember, depending on his stage of dementia, is that he may actually want to return to a childhood home he remembers. We don't always know what they mean when they say "home." Please don't let guilt get to you. Remember that you have done your best for him and that you still are. He needs more care than you can give alone. Keep in touch with us. Other caregivers will really understand.
Carol