Coping when Both Parents Have Dementia

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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 is a cry that is all too familiar for many family caregivers and one which will touch the hearts of most readers. Many of us feel alone when we are trying to care for our aging parents and there are no siblings to help, or our siblings won't help. When we have one parent who has this disease, it is hard. When we have two, it is often nearly unbearable.

An Overlooked Impact of Dementia Care

There are many different kinds of dementia. My dad's condition resulted from surgery, while Mom's developed more subtly—the type they used to call "senile dementia." Now it is called "organic brain disease." Whatever the type, Alzheimer's disease, vascular, Pick's disease, Parkinson's-related or just plain "organic brain syndrome," it is 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 the people they are caring for. Some of those are adult children, lonely, depressed, isolated, frustrated and 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.

My Experience Caring for a Demented Duo

For a while, my mom's disease consisted of minor memory loss, and she was able to be a fairly active part of my dad's care team after his surgery left him demented. However, as is to be expected, her condition worsened and I was soon coping with both of my parents' odd and forgetful behaviors.

For example, their wedding anniversary was the day after Christmas. I would always bring to the nursing home tiny bottles of champagne and their 25th anniversary champagne glasses. I would also bring other treats and we would have a party. I also brought cards for them to give to each other.

I would sign Dad's card to Mom, since he was unable to and didn't really know what it was. Mom would sign her card herslef, but soon after she would forget what it was for. I would then pile the things into Mom's walker bag and take her down the hallway to Dad's room. (They each had a private room on the same floor.)

Generally, I'd have to drag Dad out of foggy sleep, sit him up and, with a big smile on my face, give them each their cards to one another, explain what they were for, read them with gusto, pour champagne, explain again what they were doing, let Dad fall back to sleep in his chair, and then bring Mom back to her room. Like a puppeteer, I would arrange bodies, move limbs, orchestrate a production. Each time I left for home feeling exhausted.

Why did I do this? Because I didn't want to have to lie a week later when Mom become aware that their anniversary had passed, when she happened to be looking at her new calendar I brought for her wall.

I knew I would hear, "We missed our anniversary! Why didn't you…?" I'd hear this whether we "celebrated," or not. So, I did it. It felt like a sham, but I did it. How did I cope? After I got home, I cried. I cried for them. I cried for me. Pain, frustration, anger, exhaustion, pity, for them and myself, sorry to say, it was all there. The seeming futility of the production was more draining than the activity itself.

Facing Reality and Asking for Help

So, how are we caregivers supposed to cope with such frustration? Much of it stems from grief, and even anger. It is okay to say that. In the case of our fellow caregiver from the forum, her sister died and left her with two demented parents. She is all alone. Logic tells us that her sister did not do this "to her" on purpose. But caregiving is rarely based on pure logic. This about her feelings, and these feelings are human and justified.

Aside from the emotional aspect, how are we to cope with caregiving itself? The simple answer is to seek help. Get support from people like those on this site. Get support from caregivers who have felt what you are feeling and will not judge you for it. Get professional help caring for your parents by calling your local Area Agency on Aging and beginning a search for in-home care, assisted living, memory care, or nursing home care. Lastly, please see a doctor for yourself. Your health is important to begin with, but now two other people's welfare depends on you. Neglecting your own needs to see to theirs does not benefit your parents in the long run. Emotional support from a professional may be necessary as well, and, in some cases, medication may be needed.

You do not want to be a statistic. You need and deserve a life. Know that you are not alone and seek out these resources. And please keep coming back to talk with us. Sometimes everything we do for those who cannot remember our efforts can seem worthless, but it's not. Fellow caregivers understand this better than anyone else. In the end, you will be glad you did your personal best, whatever that may be. That is all you can do.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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25 Comments

both my parents have Alz/dementia. My mom is in assisted living ($5400 month) Dad is @ home. My husband, brother, 1 hired staff & I provide round the clock care. we're running through their life savings like water. I'm weary & angry. Weary because I work full time then sleep lightly - my dad wakes up in the middle of the night "going home now" (he IS home)... Angry because the government they've supported all their lives puts a higher priority on the financial institutions that wrecked the economy than helping sick and suffering seniors.
My heart goes out to all of you who are doing any 24/7 caregiving...for one or for both....part of the year....or sharing with relatives....I just don't see how you do it! I've been handling things for both parents for 18 months. Dad with dementia, placed in a facility last January, so almost a year ago. Mom newly diagnosed last summer with early dementia now...Alzheimers....and home alone. I live 5 hours away and have the help of an eldercare casemanager and an eldercare attorney who's office helped get Dad qualified for Medicaid finally, last month. Yes...one goes through what money there is so fast it isn't funny. I am the only child, since my brother died at age 37. I am 68, married, husband may have early Parkinsons (and THAT IS depressing to consider!) and I still run a home based business. I am so stressed all the time, I cannot imagine if I had to add actual caregiving into the picture....and I am a retired RN! I've had to pay to fly daughters in x3 in the last year just to help me, because I couldn't be down with the parents AND meet the deadlines for all the applications and paperwork necessary for the Medicaid and VA work. Parents would have a crises....and I would miss a deadline, and it would start all over again the next month with submitting all the financial info. My business fell off by 50% this past year due to them....and the reason for the business to create something sellable to shore up our own lost retirement savings in 2008.....thank you Congress and government.... And, of course, NOW....I couldn't even look forward to any inheritance since it's all being spent for their care. It's not that I am upset about that...but I AM upset about our own financial future....that I cannot secure at the moment. Life is VERY frustrating and if I didn't have GOD in my life, I know I would break down over all this. I just know He won't give me more than I can handle. My parents are almost 92 and just turned 88. I just don't know what's going to happen next.....don't have much time to reflect on it....and generally just take one day and one crises at a time! I am glad to have this forum as I don't have many other resources for support.
Talk about having kindred spirits on this site ... yes, I am pretty much living with my parents even though my house is a block away. I fiercely believe that my parents should remain living at home for as long as they possibly can and we all know the difference when they have to spend time at an assisted living facility. At least when I have them at home, I am in charge of making sure they're getting the right medications and nobody is speaking to either one of them in a patronizing manner. You know what I think is the worst thing about burn out? We are so close to the situation we don't even realize how bad it is sometimes. For instance, my sister came to visit this past weekend from out of state and I went home and passed out for an entire day! I think what helps me, though, is that both my sister and I share the duties as Power of Attorney. Fortunately she takes care of the finances and will let me know if we can hire extra help --- she lives about 15 hours away so she couldn't be involved in any hands on caregiving even if she wanted to. I, on the other hand, am not all that savvy with money but I'm better equipped to make sure they get to the Dr and I am able to make sure they get needed services and stay safe and comfortable. It's about 4am and Mom woke up a little bit ago ... she went to the bathroom by herself but had trouble getting back in bed and fortunately Dad has a bellow that carries so once I was up - he wanted to know if I was hungry for a snack and of course that means he wanted something to eat :) So thanks for helping me unwind and now it's back to bed for me.