@jude5: You are being a great care giver for your husband. I offer you a hug for your decision to honor your husbands wishes when he has had enough of dialysis. I think you have handled his healthcare perfectly. It seems like you would benefit from weekly time to yourself… perhaps a neighbor or family member could provide you a couple hours that you can look forward to “your time away”. All the responsibility you shoulder 24/7 is more than anyone should suffer. Be good to you!
Hi
I am the sole caregiver for my husband of almost 56 years. I’m 76 and he is 79. His kidneys failed 4 years ago after kidney disease for 12 years. He also has developed dementia and it’s progressing fast. I hardly sleep at all. He yells out at night loudly which is scary and chatters on in his sleep the rest of time. And he will get out of bed and walk around the house so I have to check if he opened doors. He’s so tired of everything and I believe he’s ready to stop dialysis soon. He says when he has a lucid moment that this is not life to him. I get it. And I promised him when his kidneys failed that it’s his decision only. No one else’s when he is done. Am I wrong to support him? It’s really hard but I think I wouldn’t want someone making my choices.
What can I do when he’s in the nasty side of dementia as he cusses me out and everything is my fault. I’m not scared it’s more hurtful with his words.
Thank you for listening 🙂
Hello @jude5 and welcome to Mayo Clinic Connect! It sounds like you’ve worked very hard and now both of you are worn out by the sickness and caretaking. Have you thought about hospice? They offer many things to help suffering patients and families.
Are you asking for advice on what to do next or just finding out what others have done?
Hi
I am the sole caregiver for my husband of almost 56 years. I’m 76 and he is 79. His kidneys failed 4 years ago after kidney disease for 12 years. He also has developed dementia and it’s progressing fast. I hardly sleep at all. He yells out at night loudly which is scary and chatters on in his sleep the rest of time. And he will get out of bed and walk around the house so I have to check if he opened doors. He’s so tired of everything and I believe he’s ready to stop dialysis soon. He says when he has a lucid moment that this is not life to him. I get it. And I promised him when his kidneys failed that it’s his decision only. No one else’s when he is done. Am I wrong to support him? It’s really hard but I think I wouldn’t want someone making my choices.
What can I do when he’s in the nasty side of dementia as he cusses me out and everything is my fault. I’m not scared it’s more hurtful with his words.
Thank you for listening 🙂
Hi @jude5, some people have posted that melatonin helps when their loved ones have agitated sleep. I give my husband 5 mg and it usually quiets him down. Some people here have posted that 10 mg, twice at intervals, 4:00pm and later, works well. Best to check with the doctor if melatonin would be okay for your spouse.
Yesterday we had a visitor my husband was able to tolerate for five hours. He stayed up until I went to bed and slept through the night, no talking or yelling out loud. I guess he was tired and talked out from the visit.
When your husband gets angry with you, can you leave his immediate presence for a while? I find that works. I also find agreeing with my husband de-escalates things. Sometimes I say, I'm a terrible person, and if you like, you can live somewhere else. Then he protests and we're good again.
Sigh, this is work that requires some cunning!
You are doing a fine job.
When people resist wanting to let their loved ones go, after they stop eating or express the desire to stop treatment, I always wonder who is that for, the loved one or the caregiver/relative who can't say goodbye?
Take care.
Hi @jude5, some people have posted that melatonin helps when their loved ones have agitated sleep. I give my husband 5 mg and it usually quiets him down. Some people here have posted that 10 mg, twice at intervals, 4:00pm and later, works well. Best to check with the doctor if melatonin would be okay for your spouse.
Yesterday we had a visitor my husband was able to tolerate for five hours. He stayed up until I went to bed and slept through the night, no talking or yelling out loud. I guess he was tired and talked out from the visit.
When your husband gets angry with you, can you leave his immediate presence for a while? I find that works. I also find agreeing with my husband de-escalates things. Sometimes I say, I'm a terrible person, and if you like, you can live somewhere else. Then he protests and we're good again.
Sigh, this is work that requires some cunning!
You are doing a fine job.
When people resist wanting to let their loved ones go, after they stop eating or express the desire to stop treatment, I always wonder who is that for, the loved one or the caregiver/relative who can't say goodbye?
Take care.
Thank you Teri. We tried the melatonin in the past but it didn’t work for him at all. If I convince him to stay up to at least 10 pm he sleeps better. It’s his nightmares that wake me and his walking around the house during the night. I listen to make sure he’s in bed and snoring then I get up to make sure the doors are still locked. I get maybe 4-5 hours of sleep.
Hello @jude5 and welcome to Mayo Clinic Connect! It sounds like you’ve worked very hard and now both of you are worn out by the sickness and caretaking. Have you thought about hospice? They offer many things to help suffering patients and families.
Are you asking for advice on what to do next or just finding out what others have done?
Finding out how others handle someone with dementia. It’s just the nasty side to me that is hard and stresses me. It’s like I don’t know him. Accuses me if being controlling and I tell him one of us has to have control as he does nothing and mostly can’t. But he does love being waited on. When I encourage him to do a small task he’s nasty but when he actually does something he feels useful.
I always think if this was me I would want to do something even if I do it wrong at least I tried.
Am I wrong? If so let me know all ideas please.
Thank you😍
Finding out how others handle someone with dementia. It’s just the nasty side to me that is hard and stresses me. It’s like I don’t know him. Accuses me if being controlling and I tell him one of us has to have control as he does nothing and mostly can’t. But he does love being waited on. When I encourage him to do a small task he’s nasty but when he actually does something he feels useful.
I always think if this was me I would want to do something even if I do it wrong at least I tried.
Am I wrong? If so let me know all ideas please.
Thank you😍
@jude5 it sounds to me like you’re doing all you can to make sure your husband is healthy and safe. None of us can control what dementia causes a person to do, unfortunately. Just keep participating in this conversation and you will get lots of help!
@jude5 it sounds to me like you’re doing all you can to make sure your husband is healthy and safe. None of us can control what dementia causes a person to do, unfortunately. Just keep participating in this conversation and you will get lots of help!
My exhaustion comes from taking care of two parents, mom having late stage Alzheimer’s. I feel like I’m always lifting, transferring, and wiping. That is very tiring emotionally, as well as physically. My husband helps with my dad who is still mobile with a walker, and I basically care for most of my mom’s needs. Sometimes my husband does her lifting if he’s around. I couldn’t do this without him. Or without the emotional and spiritual help of my Lord Jesus. I’m not sure how long I can continue, but each day is His.
Finding out how others handle someone with dementia. It’s just the nasty side to me that is hard and stresses me. It’s like I don’t know him. Accuses me if being controlling and I tell him one of us has to have control as he does nothing and mostly can’t. But he does love being waited on. When I encourage him to do a small task he’s nasty but when he actually does something he feels useful.
I always think if this was me I would want to do something even if I do it wrong at least I tried.
Am I wrong? If so let me know all ideas please.
Thank you😍
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1 ReactionHello @jude5 and welcome to Mayo Clinic Connect! It sounds like you’ve worked very hard and now both of you are worn out by the sickness and caretaking. Have you thought about hospice? They offer many things to help suffering patients and families.
Are you asking for advice on what to do next or just finding out what others have done?
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Like -
Helpful -
Hug
3 ReactionsHi @jude5, some people have posted that melatonin helps when their loved ones have agitated sleep. I give my husband 5 mg and it usually quiets him down. Some people here have posted that 10 mg, twice at intervals, 4:00pm and later, works well. Best to check with the doctor if melatonin would be okay for your spouse.
Yesterday we had a visitor my husband was able to tolerate for five hours. He stayed up until I went to bed and slept through the night, no talking or yelling out loud. I guess he was tired and talked out from the visit.
When your husband gets angry with you, can you leave his immediate presence for a while? I find that works. I also find agreeing with my husband de-escalates things. Sometimes I say, I'm a terrible person, and if you like, you can live somewhere else. Then he protests and we're good again.
Sigh, this is work that requires some cunning!
You are doing a fine job.
When people resist wanting to let their loved ones go, after they stop eating or express the desire to stop treatment, I always wonder who is that for, the loved one or the caregiver/relative who can't say goodbye?
Take care.
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Hug
5 ReactionsThank you Teri. We tried the melatonin in the past but it didn’t work for him at all. If I convince him to stay up to at least 10 pm he sleeps better. It’s his nightmares that wake me and his walking around the house during the night. I listen to make sure he’s in bed and snoring then I get up to make sure the doors are still locked. I get maybe 4-5 hours of sleep.
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5 ReactionsThat's rough.
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1 ReactionFinding out how others handle someone with dementia. It’s just the nasty side to me that is hard and stresses me. It’s like I don’t know him. Accuses me if being controlling and I tell him one of us has to have control as he does nothing and mostly can’t. But he does love being waited on. When I encourage him to do a small task he’s nasty but when he actually does something he feels useful.
I always think if this was me I would want to do something even if I do it wrong at least I tried.
Am I wrong? If so let me know all ideas please.
Thank you😍
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Hug
5 Reactions@jude5 it sounds to me like you’re doing all you can to make sure your husband is healthy and safe. None of us can control what dementia causes a person to do, unfortunately. Just keep participating in this conversation and you will get lots of help!
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7 ReactionsThank you Becky!
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1 ReactionMy exhaustion comes from taking care of two parents, mom having late stage Alzheimer’s. I feel like I’m always lifting, transferring, and wiping. That is very tiring emotionally, as well as physically. My husband helps with my dad who is still mobile with a walker, and I basically care for most of my mom’s needs. Sometimes my husband does her lifting if he’s around. I couldn’t do this without him. Or without the emotional and spiritual help of my Lord Jesus. I’m not sure how long I can continue, but each day is His.
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8 ReactionsMy mother is exactly in the same situation with my dad, except that my dad doesn't have dementia. We haven't found a way to solve this in many years.
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