Tag Archives: caregiver stories

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.

Optimism, pass it on

Before my mom had a true diagnosis of dementia, we made long drives to see many doctors. On these tense journeys I’d try to distract her each time we passed a huge billboard screaming ALZHEIMER’S CARE. But there was a more inspiring billboard further down the road showing Michael J. Fox and the lines, “Determined to Outfox Parkinson’s, Optimism Pass it On“. It always made me feel better.

Between the Pond and the Woods

Take the long view

The Pass it On billboards are part of an inspirational media series created by the non-profit Foundation for a Better Life. This particular sign reminded me how much I like Mr. Fox, who was so entertaining in his TV sitcoms and Back to the Future movies. His Parkinson’s Disease diagnosis would have wrung the optimism out of most people. Fox had a brilliant career and enormous talent. Despite his early fame, he never seemed vain or self-serving. But what he offered the world through his performances has long been eclipsed by the gift he’s given to people suffering from neurological diseases. He’s invested so much of his time, wealth, and name recognition into Parkinson’s research, that he’s now more famous for scientific philanthropy than he is for acting.

Optimism can dwindle when you watch someone suffer from a disease like dementia. We know there is no cure and finding one still seems far off. But, like Mr. Fox, I always try to look at the bright side. Even as dementia has stolen more of her skills, our family still has still had the opportunity to love my mom during her six years with the disease. Her problems get more complex and care is more difficult. But I think about those billboards every now and then. Fox says of his Parkinson’s Disease, “I can get sad, I can get frustrated, I can get scared, but I never get depressed – because there’s joy in my life.”

That is a powerful message for caregivers and dementia patients alike. Optimism, pass it on.