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Two Parents With Dementia: How Do Caregivers Cope?

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My mom and dad both have dementia. I am all alone taking care of them since my sister passed away I have no one to help me. I get sad and frustrated with them both. How do I deal with my feelings?

These are powerful words from one Agingcare.com forum participant. It’s a “cry from the wild” which will touch the heart of most caregivers. Many of us feel alone when we are trying to care for our aging parents and there are no siblings to help, or if there are siblings, they can’t or won’t help. When we have one parent who has dementia, it is hard. When we have two, it is often nearly unbearable.

My dad had dementia from surgery. Mom developed a more subtle type of dementia, the type they used to call “senile dementia.” Now it’s called “organic brain disease.” Whatever the type – Alzheimer’s disease, vascular dementia, Pick’s disease, dementia due to Parkinson’s or just plain “organic brain disease,” which sort of applies to them all - it’s painful for the caregiver. Sometimes the pain is so raw and isolating that the caregivers become more ill than those they are caring for.

Statistics vary, but upward of thirty percent of caregivers die before those they are caring for. Some of those are adult children, lonely and depressed, isolated and frustrated, often torn by guilt. These caregivers can develop cancer, commit suicide, or have heart problems and other ill health that can likely be traced to the stress of caring for their loved ones.

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Brandywine40 said
Dec 6, 2009

I am the caregiver of my mom. Going on two years. My brother is 1500 miles away and can't understand why mom can't play golf like the other 90 year old.
I am at the point I don't know what to do. It was my birthday & my fiance made reservation in Boston at a very nice place for dinner. I didn't want to go. I just didn't want to be that far away as mom gets so confused. We went but the train didn't run on time. We missed the reservation. I started calling home & no answer. I was scared frustrated, and mad at no one..Just mad. Its been two years and I cry all the time. Stressed to the max. Oh mom was OK. Had just gone to bed ( who knows why) she had only been up a couple of hours Forget the fact she didn't bother to eat. Oh well. Another day

arose4yu said
Dec 7, 2009

It's bad enough having one parent with dementia but having two is almost impossible. My mom has dementia, my dad has chf/copd and recently was diagnosed with mild dementia. So I know what it's like- BUT I am fortunate that I have my sisters and brother who tries to help at least financially. It's hard for us and especially for my sister who is almost 20 years older than I and she was widowed at a young age--life has been very unfair to her. How do we cope? We cry, we fight but most of all...we try to laugh all the time. We have hired help but it's still very stressful because we don't know how long we can afford them and have to deal with conflicts, scheduling etc. All we can do is keep trying, keep planning better strategies....

Spiritcat said
Dec 9, 2009

I didn't get if your parents are living in their own space, with you, or in a home, and what the fiancial resources are. All of these will majorly affect what can be done .

HOWEVER, the biggest obstacle to intelligent planning and problem solving is GUILT. Remember, if you totally sacrifice yourself, there's no way you all won't go down the tubes. Other people whose heads are working are totally necessary to help. Find as many of these as you can.

And something to keep in mind is the balance of possibilities. Think of a scale. All the small to medium things you do for them will make very little difference;BUT the small to medium things you do for you, such as taking time out, putting your needs front and center, saying "no", doing some things that feel good, etc. will pay huge dividends. Your job is to find what will keep them safe - NOT what will be the best thing for them - that's impossible, so let go of that one right now!. And settle what is best for al of you.

spiralli said
Dec 9, 2009

well I feel like I am officially in hell... Im doing just great, eh? Hah! We do have good days, but today was not one of them, at this point we are totally out of money for help and I came back to assist them but find that I cant work full or really even part time so all of my money has run out, and now... I live with two crazy people who despite my knowing they are not themselves, can hurt me deep to the core with their mean comments! My sister is in New Mexico and really not able to help.

Spiritcat said
Dec 9, 2009

You are in hell, and will stay there until you get an elder lawyer and find a nursing home that will take medicare and get them in there. And then find some way to reclaim your life.

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LynnIvey

Lynn Ivey

President & Founder, The Ivey Adult Day Care
Charlotte, North Carolina

Lynn Ivey left her banking career to care for her mother with dementia. Adult day care became a critical component for her mother, providing social stimulation and medical supervision, while enabling her to continue living at home.

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