Caring for a Loved One with Dementia: It Takes a Village

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In my last report on Charlie’s journey with his latest health crisis, he had moved to his daughter’s home five hours from me. It seemed to be going well, but then things suddenly took a turn. His daughter found that full-time caregiving in a home setting on top of responsibilities for children, a husband and a home to manage was more than she could handle. At her wits end, they arrived on my doorstep in the middle of the night three weeks ago.

Charlie was ecstatic to be home, while I welcomed him with trepidation. At the end of his hospital stay, I was prepared to place him in nursing home. To have him suddenly returned home, with all VA help discontinued, was upsetting to say the least.

The first thing I did was reapply to the VA to have the Home Based Care Plan and Veterans In Place program re-established. This involved a lot of paperwork, and I am still waiting for the services to begin. In the mean time, we are muddling through, but doing surprisingly well.

His condition has improved considerably since he was discharged from the hospital. In fact, physically, he is almost back to where he was before a bacterial infection and rheumatoid arthritis laid him flat. However, his mental acuity has suffered. A VA provider gave him a mental test this week in which he scored one-half what he scored six months ago.

Today he cleaned his glasses with Whiteout, the product meant to cover errors on paper. In case you were wondering, no—it is not water-soluble. I laughed hysterically as I scraped it off his glasses with my fingernail.

His incontinence has also worsened since his hospitalization. The doctors are not sure what to blame for that; it may just be a result of his worsening dementia. So far, he is able to use a urinal at night, so I can sleep through the night without getting up 5-6 times to help him to the bathroom. The downside was the night he spilled his urinal on the newly cleaned carpet. There was a throw rug in place to catch such spills, but, as luck would have it, it overshot the rug. I’m afraid I lost my cool over that one.

Charlie’s love affair with wine seems to be history, though. After six weeks of hospital sobriety, I decided to try playing the fool’s game. Whenever he asks for a glass of wine, I pour him a “cocktail” of red or white sparkling grape juice, fruit flavored water and ginger ale. He has never questioned what kind of “wine” he was drinking or noticed that he did not get the expected rush from the drink.

After nine weeks of “freedom” while Charlie was in the hospital and with his daughter, I have found the confinement resulting from caring for someone with mental and physical ailments to be stifling and exhausting. Once I have some helpers in place, the job will not be so daunting.

I can’t imagine what many of my readers are going through with little or no help available to give them a break from the stress and loneliness of caregiving. It only took Charlie’s daughter three weeks to realize she couldn’t do it, but she had a solution to her dilemma that many of you do not have access to. God bless you all.

Marlis describes herself as a “Gramma who loves technology and has a lot to say.” She blogs about whatever catches her interest: food, books, family and more. For AgingCare.com, she writes about the issues facing the elderly and her experiences caring for her husband, Charlie, who suffers from dementia.

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11 Comments

Marlis, when you wrote the time before I was wondering how long Charlie's daughter would be taking care of him before realizing how much work is involved.

I am laughing at the white-out, oh my. Now a days the younger generation doesn't even know what that is :) And how clever using grape juice inplace of wine.... grape idea !! Reminds me of an episode of the Honeymooner's when Alice secretly put grape juice in a wine bottle and Ralph and his buddy Ed were drinking it and started to get drunk :P

Hope you get the in-home help you need ASAP. Or will you still be looking into a continuing care facility?
Marlis: great update. I too have an empty dance card when it comes to another human handy for the nocturnal dance to the bathroom every hour. Mom (92) been my roomie since 2010; the bladder on warp speed seems to have started in hospital in June with an ER visit with congestive heart failure. The new $398. Vesicle script does not seem to work. I was horrified at the price of 90 days of this medicine since I run the entire house on a bit over $700 a month. ( Interesting comparison:-that $398 would have gotten me 16 hours of in home care, or two nights.) God is the only reason I'm still standing. I'm normally a positive person, and a tough cookie. Very concerned that I'm not doing well. Mom has $4k in the bank, and she and POA out of town sister are not working to reduce that amount- are not interested in Medicare and the managed care option. I'm beyond burned out. Was a commuter/caregiver for thirteen years prior, as Mom and Dad lived 45 miles away. At least I had an income then, and could go home ! I'm 58, and have paid off the house, kids are grown, I've divorced 14 years ago. Older brother and younger sister just seem to look the other way, so I know I have to go this alone. I find hope in numbers: I think there are 63 million of us. Time to pester the 'government' that's in business just for itself.
Oh Marlis, how nice to get this update on you and Charlie . I have wondered how you get along with no help. Hopefully you will soon get the help you need. My husband of 52 years has been gone over 4 months now, and the loneliness is almost unbearable at times. I would just encourage everyone to treasure each and every day with those they care for. God's blessings to you, dear friend, and to all who read your most interesting writings. 🔆