Two Parents With Dementia: How Do Caregivers Cope?

Text Size: - +

18 Comments

 Print

Email Email

 
<strong>Two Parents with Dementia</strong><br>Coping when caring for both parents

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 siblings won't help with caregiving. 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. There are many kinds of dementia. 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.

 
This article is filed under: alzheimer's caregiver, dementia caregiver
 

Comments

 
  •  Comments 1 to 10 of 18 
 
 

Brandywine40

Give a Hug

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

Give a Hug

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

Give a Hug

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

Give a Hug

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

Give a Hug

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.

 
 

AmazingGrace

Give a Hug

Dec 9, 2009

My dad died with a brain tumor last September and my mom has AD, so when he was diagnosed, I took a leave from my work and moved in with them to take care of both. Fortunately, I have an understanding husband who loves them as much as I do. I'm an only child, so I was pretty much on my own. He only lived for 5 months after diagnosis, but that was the hardest time of my life. Bless his heart, I wish he had lived longer, but if he had, I couldn't have kept up the pace with them both and would have to had put them in a home. I had to make a choice about my mom after he died and I visited some nursing homes, but ultimately decided that I would try to take care of her in my home. I am blessed that she settled in nicely and has been as happy as possible. I have a sitter, which her SS check covers for 4 or 5 days a week so I didn't have to quit my job. As long as she is doing well here, I will keep her. I feel that if and when it's time for her to go to a home that I will know it in my heart. It's different for everybody. We all know what we can live with and what we can't.

 
 

mm

Give a Hug

Dec 10, 2009

My mother passed away from AD Dec 3rd. I'm an only child and my mother's last relative. She was in a home 2 blocks from our house for the last four years. I moved to part-time work as her care became more difficult, going every day to feed and care for her. We didn't go away often, even short trips were stressful, because I always worried about her. Now that she is dead, I find that I can't turn the worry off. It will take a while for my body to realize that the adrenaline doesn't have to be flowing all the time. There were days that I thought I wouldn't make it, but a supportive network of friends, and my husband carried me. I had and still have all the same mix of feelings, you all have mentioned: anger, grief, depression, but my time with her was one of the most important things I ever did. In all the pain, it made me more fully human and painfully stripped away all my layers of self-centeredness. Blessings on you all. What you give to the least of these...

 
 

islandmz

Give a Hug

Dec 10, 2009

Thank you for the above information, my mother passed away in October of this year. But, caring for her and worrying about her almost did me in mentally, emotionally and physically. Now I know that I was not alone, there is nothing wrong with reaching out for help and understanding from those who have been through the experience. I do recommend psycological counseling even afterward,( i.e. grief counseling). Thanks again

 
 

It does sound like spiralli's parents would qualify for Medicaid, if they aren't already on it. Spiralli, you are genuinely overwhelmed, which is entirely understandable.

Medicare will not pay for nursing homes, but Medicaid does. If both of your parents qualify, that may have to be your solution. You cannot sacrifice your sanity and health for them. They would not want that if they could understand what is happening.

If you do find a good nursing home (and good is realtive and depends a great deal on where you live), you will still be their caregiver. You will be getting help for them and for yourself. You will be able to take care of them better as you will be able to refresh yourself. They will need you to be their advocate and just because you are you. The staff should treat you as a partner.

Please look into Medicaid and get some help through your state's aging services, found on their Web site.

Take care,
Carol

 
 

spiralli

Give a Hug

Dec 11, 2009

Thank you Carol... I suppose we are getting to that point... We are in the middle between Medicare and Medicaid... I think we have to loose the house to get Medicaid (Which we were trying to keep).

I thank you so much for your comments.

Li

 
  •  Comments 1 to 10 of 18 

Add Your Comment

Find Senior Housing that fits you needs

Search location:
I am looking for: