What is right?

Posted by snowmile @snowmile, Jan 28 2:22pm

My mom is 93 with dementia. I think close to late stage 5/6. We are trying to keep her at home as long as we can manage. She has not bathed herself in at least 3 years and will not change her clothes without begging on our part, can goes days in same clothing.
She wears pull-ups. The big issue is this- twice I had had to close the bathroom door ans stand there with her telling her we are not leaving until she sits down n let's me give her clean underwear. It's not fun for either one of us. I yell, she tries to push me away but eventually I rip the dirty pull-up off, get her to sit, get her cleaned with fresh underwear n pants. She forgets completely shortly after the episode is over but I feel guilty for yelling n not knowing a better way to go about it. Sometimes she is fine, accepting of my help n being clean but sometimes not, and ts what I described above.
Is this what other caregivers are doing? She can't sit in that mess all day. What is the proper way to handle it? I think if she was in a memory care facility they would need to do the same thing....right?

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First of all give yourself a hug and know that you are being a wonderful daughter trying to keep your mom clean and close to you. I cared for my mom for the last 8 years of her life when she was very ill and recently widowed. I was fortunate that she was very mentally coherent but I realized after she died that she had been very lonely and I often think I should have placed her in a care facility where she would get both physical and mental socialization on her level as well as routine physical assistance that was hard for me to provide. The 24 hr stress on me would have lessened and I could have offered her more when I visited as well as her having others around her daily.
Good luck, I will pray for you.
My husband has just been diagnosed with dementia and I am entering a life I fear greatly.

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@boppi

First of all give yourself a hug and know that you are being a wonderful daughter trying to keep your mom clean and close to you. I cared for my mom for the last 8 years of her life when she was very ill and recently widowed. I was fortunate that she was very mentally coherent but I realized after she died that she had been very lonely and I often think I should have placed her in a care facility where she would get both physical and mental socialization on her level as well as routine physical assistance that was hard for me to provide. The 24 hr stress on me would have lessened and I could have offered her more when I visited as well as her having others around her daily.
Good luck, I will pray for you.
My husband has just been diagnosed with dementia and I am entering a life I fear greatly.

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First, I sorry to hear that about your husband. It's so hard. I hope he processes slowly and lots of prayers for you both.
I agree with you about the social aspect of a home and I will consider that. I do have an aide and siblings that help, I'm certainly not doing this alone, but I don't think any of us are qualified : )

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The first thing you must do as a caregiver is to be kind to yourself. You will not be perfect.
This disease is not what you signed up for in life ...yet you are doing an amazing job in the most difficult of circumstances.
The kinder you are to yourself the kinder you will be able to be to your loved one.
Because of the pain of this you will become the person you were meant to be.
We all hate the disease and what it does to all of us ...yet we must strive to stay gentle with ourselves and with our loved ones.
It is the only way to survive, Buddha

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Hugs to you and to all of US. My husband is in the early stages. 77 with diagnosed Mild Cognitive Impairment. Our biggest challenges- his loss of executive function, inability to calculate or even alphabetize but still fairly independent during the day. At night it’s been hard. When it’s dark he gets confused about time and if he has somewhere to go the next day he gets up in the middle of the night to shave and get ready. It could be 2 hours after falling asleep or 4:00 in the morning. Hence my sleep is affected and his anxiety is getting worse. I do have to remind him to shave and shower when he has nowhere to go. So it’s just beginning but I am looking to put a deposit down for a full continuum of care community hoping we can wait the 4 year waiting list and hoping we can both be in independent living, but realize I may need more services as we go along. If anything happens to me, my children will not be able to dedicate their lives to managing care. God bless you who are taking care of your parents.

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My wife is going through the same thing. What I been doing with the bathroom is I slip my left arm under her left and hold her right wrist which frees up my right hand to pull her pants down and sit her down.
My wife’s mother and my father went through memory loss both put into a home, when my wife’s memory started failing she told me then she didn’t want to be put in a home she wanted to stay with me and I like being with her still with all the problems, so as long as I can physically take care of her I will

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@buddha

The first thing you must do as a caregiver is to be kind to yourself. You will not be perfect.
This disease is not what you signed up for in life ...yet you are doing an amazing job in the most difficult of circumstances.
The kinder you are to yourself the kinder you will be able to be to your loved one.
Because of the pain of this you will become the person you were meant to be.
We all hate the disease and what it does to all of us ...yet we must strive to stay gentle with ourselves and with our loved ones.
It is the only way to survive, Buddha

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Thank you for your kind words. I do have an aide n family support but it seems we all have more questions than answers! Thank you again!

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@maryvc

Hugs to you and to all of US. My husband is in the early stages. 77 with diagnosed Mild Cognitive Impairment. Our biggest challenges- his loss of executive function, inability to calculate or even alphabetize but still fairly independent during the day. At night it’s been hard. When it’s dark he gets confused about time and if he has somewhere to go the next day he gets up in the middle of the night to shave and get ready. It could be 2 hours after falling asleep or 4:00 in the morning. Hence my sleep is affected and his anxiety is getting worse. I do have to remind him to shave and shower when he has nowhere to go. So it’s just beginning but I am looking to put a deposit down for a full continuum of care community hoping we can wait the 4 year waiting list and hoping we can both be in independent living, but realize I may need more services as we go along. If anything happens to me, my children will not be able to dedicate their lives to managing care. God bless you who are taking care of your parents.

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Oh, lots of prayers for both you and your husband. It's a long journey, I wish you both well!

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@ndclayt41

My wife is going through the same thing. What I been doing with the bathroom is I slip my left arm under her left and hold her right wrist which frees up my right hand to pull her pants down and sit her down.
My wife’s mother and my father went through memory loss both put into a home, when my wife’s memory started failing she told me then she didn’t want to be put in a home she wanted to stay with me and I like being with her still with all the problems, so as long as I can physically take care of her I will

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This is helpful info, I will try that move n see if I can do it. I do think she either forgets to sit or she is scared, even if she will not let me in with her.
It's so kind of you to honor ur wofe's wishes, bless you! We all know it's a hard job.

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@boppi

First of all give yourself a hug and know that you are being a wonderful daughter trying to keep your mom clean and close to you. I cared for my mom for the last 8 years of her life when she was very ill and recently widowed. I was fortunate that she was very mentally coherent but I realized after she died that she had been very lonely and I often think I should have placed her in a care facility where she would get both physical and mental socialization on her level as well as routine physical assistance that was hard for me to provide. The 24 hr stress on me would have lessened and I could have offered her more when I visited as well as her having others around her daily.
Good luck, I will pray for you.
My husband has just been diagnosed with dementia and I am entering a life I fear greatly.

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You have been through a lot and yet you still offer hope and caring for others. That is what makes this group so special! Your point about having more people around makes great sense, and I had never looked at things from that perspective. My husband has been diagnosed with MCI, and though the recent evaluation showed “very little change” from 2 years ago, I notice changes daily. His sister passed away a year ago of Alzheimer’s so we are both very fearful of where we are headed. Your words spoke to me. Thank you, and be well.

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@snowmile

This is helpful info, I will try that move n see if I can do it. I do think she either forgets to sit or she is scared, even if she will not let me in with her.
It's so kind of you to honor ur wofe's wishes, bless you! We all know it's a hard job.

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Try this method I learned from the aides while working in a nursing home- instead of pulling down the soiled incontinence brief, grasp the top of one of the side seams and tear down- the brief will fall down, then tear the other side and pull off. In sitting on the toilet- take off any slippers or shoes, socks, and pull down the pants. Slide on the new brief, then the pants, then socks and shoes, have her stand and pull brief and pants up. The person is ready to go with just one down and up and you aren’t struggling with to get each item on and in place. Much more efficient and acceptable to the person.

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