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Re: Getting the family to help with Mom

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KW - 

Your husband could have been me.... except ea. time my parents (who both lived with us) would have a particularly tough bout requiring my giving up work, sleep, etc, I would get angry and super resentful.  Then, once I calmed down I would ask for help - though I often got "I don't know how... or I don't have time".  Or worse, they would come by to help and ignore the care plan.

 

After they passed I was so determined to improve the lot of caregivers that I created an app for families and care givers to share a single care check list and record any health status indicators (e.g. weight, BP, or mental clarity rating) in one place (a secure cloud database) that is accessible anywhere.  

 

I am making available free to anyone who try it and give me feedback in return.  Please let me know if this might be useful for you and your husband.  - Rich      more.Humble@gmail.com

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Re: Getting the family to help with Mom

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jl43906691 wrote:

...... 

Wishing you luck that the family members will provide help but if not, then please do what YOU need to do for yourself and your husband.  It's super hard...I get it, but this disease is a bottomless pit.  After six years, I've learned that I can't fill my Mom's bucket...she can only deplete mine.  Many periods of lucidity and tons of guilt, but please try and stay subjective as much as possible.  Give yourself the same advice you would give a friend!

 


Just want to say, jl, well said, the whole post but especially this last paragraph. Too true!

 

Jane

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Re: Getting the family to help with Mom

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Well I hope that just your asking for help during the week will be all that you  need to do, but you might have to be prepared to receive resistance (for whatever reason).  Some people can handle the stress of caregiving better then others and some people are struggling with managing thier own lives.  Some people are selfish.  It is what it is and avoiding turmoil is best for everyone.  The entire family is stressed and it unleashes a lot of pent up resentment among family members when under this stress -- but it's not constructive and seldom HELPS the person you are caring for or helps you. 

 

It will be more challenging finding help in the evenings if it's not a family member but there are many paid services that will help.  Always difficult subject because rarely do we see people that can afford that help or care receivers that will allow a 'stranger' to help them.

 

My Mom went to assisted living (kicking and screaming - but she's stubborn at the core) but after about 2 months, she really enjoyed the interaction.  She needed the care and my family could no longer keep her safe!  She has psychotic episodes and truly, we were lucky (for our children's sake) that she refused to come live with any of us!  My grandmother had the disease and she lived with my aunt and her children (my cousins) and they grieve over the stress of their childhood to this day.  It's a sad fact.

 

Wishing you luck that the family members will provide help but if not, then please do what YOU need to do for yourself and your husband.  It's super hard...I get it, but this disease is a bottomless pit.  After six years, I've learned that I can't fill my Mom's bucket...she can only deplete mine.  Many periods of lucidity and tons of guilt, but please try and stay subjective as much as possible.  Give yourself the same advice you would give a friend!

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Re: Getting the family to help with Mom

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Thank you for your reply Jane, 

She actually lives with my husband and I. My husband has been her caregiver for 12 yrs and I've helped since we have been together the last 4 yrs.  I saw my Mother take care of my Grandmother for 7 yrs or more so I've seen what it can do to a family.  My husband and I used to go to the gym, go on date night, etc. but that is now very limited if we have her at home. So we've written the family a letter and have asked them to think about things we can do as a family because it's gotten to be more than The two of us can do at this time in her life.  So I'm looking for any information to have for the family meeting when we get together.  I will look into your ideas.  Thanks again, and if you have any other ideas please share!

Karen

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Re: Getting the family to help with Mom

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kw4418 wrote:

My husband has been pretty much the sole caregiver of his Mom for 12 yrs. She is a dementia patient who up until recently has been fairly easy to care for. A few years ago he asked his family for help and it went from him caring for her 24 hrs a day 7 day a week to him caring for her all week and one weekend a month. Each sibling (he has 5) take her on the weekends, leaving him with one weekend as well. She just recently started not wanting to stay at home in the evenings alone so we've written a letter to the family requesting their help in finding a solution we as a family can share as no one family can meet all of her needs at this time in her life. 

I'm looking for ideas to bring up with the family and would welcome any advice.

Thank you

Karen

 


Hi Karen. I'm so glad to hear that your husband's siblings stepped up and are helping out (though still not to the degree that your husband is!)   So i gather she lives alone, and thus doesn't want to be alone in the evenings?  Do all the 6 children live nearby? Can she spend an evening with each one? Someone bring her to the house on Mondays, and someone else on Tuesdays?

 

Is it time to consider assisted living, in some 'memory care' unit or floor in a building? She'd be in a safe situation, with food provided, and also housekeeping and laundry, and some activities to keep her occupied. These places are not inexpensive, but if she can afford it, might be a next step. "A Place for Mom" is a free service that could make suggestions based on location, and other particulars, like, she's Jewish, or Catholic, or loves to play bridge...

 

Are there any volunteer services in your area that could provide a companion in the evenings? You'd want to vet the person, make sure their legit and supervised. But perhaps there's someone who'd enjoy bring a DVD, or watching old movies with her one evening. Or, are there neices and nephews who'd take turns? Hang out with grandma and go over family photos?

 

Are you all (or is your husband) using the resources of the agency on aging that services your mother's area? Www.eldercare.gov and put in her zip code: VOILA, an agency full of helpful people. Take advantage!

 

Is she low/ modest income? Does she have a church / temple/ mosque affiliation? is she retired from the Eastern Star, or a teacher? Might be some groups with support that can include her in their circle of care...

 

tell us more... and thanks for asking!  Excellent challenge: working as a large family to act together. Awesome.

 

Jane

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Getting the family to help with Mom

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My husband has been pretty much the sole caregiver of his Mom for 12 yrs. She is a dementia patient who up until recently has been fairly easy to care for. A few years ago he asked his family for help and it went from him caring for her 24 hrs a day 7 day a week to him caring for her all week and one weekend a month. Each sibling (he has 5) take her on the weekends, leaving him with one weekend as well. She just recently started not wanting to stay at home in the evenings alone so we've written a letter to the family requesting their help in finding a solution we as a family can share as no one family can meet all of her needs at this time in her life. 

I'm looking for ideas to bring up with the family and would welcome any advice.

Thank you

Karen

 

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