Ralph survived BabyRalph’s birthday party, but I wouldn’t say he had a great time. The 6-hour drive down included a lot of pit stops, several barely in time. Ralph took a nap as soon as we arrived Friday afternoon. On Saturday morning I left him and my son at the AirBnB while I went over to my daughter’s to help prepare for the party. When I picked up my son later in the morning, Ralph was not interested in getting up yet. He ended up “resting” until almost one—the party was at two. The party ended at four and Ralph took another nap, until I made him wake up to eat something at nine. We drove home the next day after brunch—at which Ralph complained about the confusing menu although he ate every bit of his meal. I was exhausted, not from the drive or the baby, but from the anxiety.
Actually exhausted may be the wrong word. Living with and caring for Ralph at this stage on the Alzheimer’s spectrum—when his loss of memory and coping skills are not always obvious to others but demand careful management from me—can be physically and emotionally tiring. As I’ve said before, thinking for two is draining. But it is not the whoosh of exhaustion that bothers me as much as the slow drip drip drip:
The repetition of course, the constant re-explaining. But also the small limitations that seem to be shrinking my world an inch at a time. His growing resistance, that may or may not connect to inability, to sit through a movie or a restaurant meal with friends, or a TV program with me, or a conversation. His growing resistance, that may or may not connect to inability, to doing small chores from changing a light bulb to putting his dishes in the dishwasher. And most of all his growing resistance to leaving the farm. In each case, even as I fight to keep active in the larger world, I find myself lowering my own expectations.
It may not be fair, but I resent the limitations he’s putting on my life. I’m a healthy woman in my late 60s and I want to enjoy these years, but I feel saddled a little more heavily all the time. I can’t help wondering, given the history of a marriage in which he often didn’t pull his weight, whether Ralph wouldn’t be behaving in some of these ways even without Alzheimer’s.
At the same time, I know how lucky I am. Lucky that Ralph’s condition is drip drip drip, not the plunge downward others have experienced. Lucky that we are financially stable. Lucky that that I have the luxury of being resentful over such small problems….
P.S. Here is a link to an article from the NY Times on preparing advance directives in case of future dementia. The information is probably too late if you have already been diagnosed, but worth considering for the rest of us….. https://www.nytimes.com/2018/01/19/health/dementia-advance-directive.html?hpw&rref=health&action=click&pgtype=Homepage&module=well-region®ion=bottom-well&WT.nav=bottom-well
Alice in Memoryland 
How true that many others cope with issues altering the retirement years for various other medical issues than dementia which can adversely affect how they behave and interact. But everything is relative — challenging to each, can be confining to a caregiver with 24/7 mental and physical responsibilities draining. Glad you’re able to have some breaks to care for yourself — a must for your own health.
I have noticed in my professional experience that those having all sorts of medical issues, including right hemisphere strokes, various brain injuries and neuro-degenerative issues, who may also have cognitive problems, sometimes seemed to have increases in their pre-existing undesirable personality traits or behaviors. For example, family members would say, “Oh, he/she was always stubborn and is even moreso now.” The reality was that it was a consequence of brain altered functioning.
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I totally agree that how a person behaves with cognitive impairment is based on the impairment or altered brain, not on his/her previous character or personality. I am extremely fortunate that Ralph has become such a gentle soul, but I am aware his behavior could change at any time….Thanks for writing….
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Thinking for two is exhausting when you know it is only going to get worse. Feeling guilty for not exhibiting compassion and instead exhibiting annoyance and frustration adds to it. Feeling so lonely because there is no stimulating conversation. It makes for a very hard life right now.
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Thanks for writing, Karen. You are so spot on in your description. What is weird, at least in my case, is that it was in some ways worse earlier. And I know it will probably get worse down the road….
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The guilt is as emotionally draining as anything and I never learned how to not feel guilty about my resentment. It sounds you like a wee break – even a couple of day – just to do things you want to do.
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Thanks for writing this, especially since i have some breaks planned that I’ve been slightly nervous about taking. . actually writing this with a sleeping BabyRalph on my chest, always a joy if not a vacation. But have a purely play weekend coming up.
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A play weekend sounds just what you need – as well as cuddles from BabyRalph.
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Literally a play weekend–going to see Hamilton with old college friends.
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We were our friend Duck’s caretakers. He took to taking walkabouts and falling. Both of which were terribly dangerous things. In the end, they caused him to be placed in a nursing home. We were there everyday to visit and spend time. Hugs at you. You have plenty of company.
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I am truly impressed that you took on caregiving responsibility for Duck (what a wonderful name!). What an inspiration. Thanks for your support.
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I have the same thoughts, watching the same process here at my house. In my late 60’s and finding the current pace of life frustratingly slow at times. Can’t help feeling resentment at times for having more and more responsibility that is less and less rewarding.
What helps me get perspective is realizing how an awful lot of couples this age and older have SOMEthing going on that affects the balance of the relationship, that makes new demands, that causes one party to have to accommodate to the other, etc. In our case, it’s dementia, but it could be another chronic condition, or sudden loss of a faculty, or financial crisis, or…
But it is hard not to feel stuck, with the world growing smaller and options becoming more limited, from not being able to watch a tv series together to not being able to attend social events we always did.
Hang right in there, Alice! You’ve got company!
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You are so right that other couples our age are going through their own struggles and facing crises. This time of life is complicated whatever challenges we face. Thanks so much for reminding me.
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Makes me think of the other day, in this support group I attend, we got to mulling over all the restrictions and limitations that the caregiving job leads to, and then someone said, “Here, you can have my life!”….and no one wanted to trade!
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I’m laughing out loud
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Great post Alice. You so eloquently write about the emotional drain that caregivers feel, as the disease progresses. It’s hard not to feel resentful; I think those are “normal” feelings given the situation.
I’m reminded of a post in the blog Welcome to Dementia Land, where Elaine writes about the fatigue that is experienced by those with dementia. I always had a hard time figuring that one out. But she suggested that sensory overload, especially if the circumstances were new or different, literally exhausted the brain of the person trying to cope/understand these experiences. To help me remain empathic as I observe the ever increasing fatigue and tiredness, I try to imagine what it would be like if I had to sit in a room for 4 hours, taking a chemistry exam!
It’s so hard, this journey that we are on. I’m glad we have each other for support along the way.
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Yes, that fatigue issue is so real. Watching Ralph struggle to keep up over the birthday weekend, all of us present could understand how exhausted he became. Barely having passed high school chem, I find that example particularly apt and horrifying. Thanks so much for responding.
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Your feelings are perfectly normal. Don’t feel guilty for having them. I hope you follow the blog…Life’s Little Surprises.
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Of course you are spot on. I realize my negative feelings are normal, and unfortunately so is the accompanying guilt. I do follow Life’s Little Surprises but you have reminded me that I haven’t checked it in the last week or so. Going to now…Thanks….
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