Tag Archives: caregiver health

Memories and Mothers

Peel back the exhaustion, stress, and worry. Inside each caregiver you’ll find someone else: a child, husband or wife who gave and got love, never knowing they’d be sharing the future with dementia. Mother’s Day awakens the girl inside me whose mom looked cool in a mini dress, dancing the Jitterbug with my dad.

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On Saturday nights, she was a tiny, blonde in heels and sparkly earrings. For church on Mother’s Day, she dressed my sister and me in pink skirts that matched her own. We sat in the pew like a row of tulips, bowing and raising our heads when she did.

Spring brings many reminders of those times. It might be the pastel flowers that make me think of Easter hats. But simple celebrations made Mom happy too. There was a long patch of grass that bordered an old garage near our house. Every May that strip of land gave birth to zillions of bluebells. On the way home from school, I often stopped to pick some for my mother. Sometimes I stayed ’til my tiny fingers couldn’t pluck another flower. Then I carried them up the hill to a woman who was worried sick because I was half an hour late. Sorry, Mom, I wanted that bouquet to be big as a meadow, grand as my love. When you’re six years old, that takes a long time.

This year we had fake Mother’s Day a little early. For a Mom with dementia, a Wednesday is just like a Sunday. It was the only time my sister and I could merge our schedules to bring us all together. We took Mom out to dinner and she was quite happy. Being fed by two daughters at once made her feel like a queen.

On fake Mother’s Day, we were caregivers. Dutiful, organized, and protective while other people stared at the mashed potatoes we spooned into her mouth. But today, as I spied a patch of bluebells, I felt like her child again. Remembering the race into the kitchen, flowers in hand, wanting to make her laugh with joy.

Those days are long behind us, but I picked some bluebells for my own pleasure. They remind me that being her child was a privilege; caring for her is sometimes like that, too.

Care for the Overwhelmed

Last week I couldn’t write because I was on call for Mom’s six-month appointment with her Philadelphia dementia specialist. While on cross-county chauffeur duty, I received the message below from a distraught caregiver signed OMG 5230. Readers: if you have suggestions, please chime in:

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I am not fascile with blogging. I have never done it and I’m not even sure who sees this. Anyway, I am dealing very poorly with my husband’s Alzheimer’s. This has been going on for 4-5 years. He is on the regular meds, has had every other thing I have ever heard of which could help, which I might add, DID NOT. I am so filled with anger, sadness, frustration, resentment, etc. Now all that said, we still do enjoy lots of activities, though someone is with him 5 mornings a week, so I can get some free time. He is 100% physically healthy and still enjoys walks, tennis, swimming, all kinds of physical activities, which is a blessing. While he still remains adept at these activities, he is losing language and this is what I have noticed more than anything else in recent months. At times he doesn’t know what the word “television” is. I will tell him “in the television room” and he doesn’t know what I’m talking about. He looks amazing. Looks 15-20 years younger than his actual age of 75. His family is riddled with this heinous disease. I have literally no family support as his family is scattered. His children, one who lives far and the other who lives close, thinks seeing him 1x/week is sufficient. For me, it doesn’t matter, but I care for my hubby because he still gets great pleasure from his kids. I am so over trying engage them. I have decided they will do what they do and I am not going after them. I have explained that it is not for me, but for them, so when things get so bad he doesn’t recognize them, they won’t feel guilty because they will have given him their all when things were still OK. My friends would do anything for me and they have been wonderful. I make sure, while my guy can still enjoy going out for dinner, concerts, etc., that we do it almost nightly. I know this won’t last forever, but for as long as it does, we will keep going. I signed up for individual therapy because I believe my hubby’s doc thought I was chasing rainbows trying to find something which might help. Truth is, I will probably continue to do so, now using coconut oil, until there is nothing or he is clearly out of it. I can’t say I’m in denial because I know all the horrors. I don’t read a lot about the disease because it makes me sick and I already know plenty about the future, since he had siblings who died of this disease. Just being in the day is enough to absorb without also reading about how terrible our future will be. He is not ready for a day program. He would bolt, without question, which would then lead to the program dismissing him. He is not “good enough” for a senior center because he cannot follow commands or simple directions, at times. So at this time, it is me keeping him occupied with myself or the fella he spends time with and whatever social activities we have. I know this all must be old hat to many of you on the site, but I just don’t know how to “GROW PATIENCE” and not HATE this illness. I have talked with others who said they are just happy to see their parent be happy and laugh and smile. I guess I’m more difficult to please or because he still does smile and laugh plenty, that is not what I yearn for. I’m not a religious person, so my faith is not helpful here. I miss my buddy, my lover (which by the way, he is still interested in, but I’m not). It is increasingly difficult for me to be intimate with someone I take care of (in many ways like a child). He just isn’t my partner any longer in an = way, which of course you all understand. I feel badly when I am not interested because he does feel rejected but I just can’t do it. Wow that’s enough for now. I’m tired just writing all this. I don’t even know how people respond to me, if they respond. I guess I just go back on the site and see if there are replies. I really don’t know. Here’s hoping. Thanks for reading. OMG

 

My comments: “Dealing very poorly” — Since you exercise, get morning care breaks, and try to enjoy the skills he still has, I think you are actually dealing better than you realize. Sounds like what hurts most is the emotional loss of quality companionship from someone you love dearly. A caregiver support group might help you with this. In many ways, the sadness during this stage was the worst I experienced. Part of your original pal is still there, making you long for the old times. Getting accustomed to a new normal is very hard. Writing helped me process some of these emotions. Grief is at the core of it all. Dealing with it directly (even on paper) might help. Grow Patience” — I was never a very patient person. I’m always trying to do more things than are humanly possible. When my mom’s skills got really bad, I would just go nuts waiting for her to sloooowly get her socks on, slooowly eat her dinner. Then I realized that she was actually teaching me something. Somewhere in that process, I became more compassionate. Not sure why or how, it just happened. I could see that I needed to shift my perception of what was going on and accept the fact that it was out of my control. You say you are not practicing a particular faith. I would recommend learning to meditate. It is not a religious practice and the medical establishment is now documenting the benefits of meditation for patients as well as caregivers. More than any other thing, this has helped me to stay in the moment with my mom and appreciate the small victories. If you want to get the most out of the time you have left, little pleasures must become your best friends. Know all the horrors — Yes, we know them. I absolutely forbid myself to dwell on them. Sounds like you still have a lot of quality moments with your sweetheart.  You must focus on that.    I wish I had more to offer, but I’m hoping readers will make good suggestions that didn’t occur to me. And I send you a sincere, virtual hug.