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Introductions: Are you caring for someone with dementia?
My mother-in-law (MIL) had what was finally determined to be frontal temporal dementia. She had the disease from her 60s until she passed away at 86. My wife was especially involved in her mom's caregiving due to some serious denial in other family members and a GP who refused to diagnose, even when significant deficits were obvious (mistaking the UPS deliveryman for her husband and not knowing the difference between roads and sidewalks). The most unfortunate result of this, to me, was the lost time when my MIL and her family could have been having meaningful and important discussions about significant matters of importance to her and them.
In my wife's years of fighting her brain cancer, she, too, exhibited many of the aspects of mental degradation and physical losses one would affiliate with a dementia patient.
As an aside, for several years I worked for the national Alzheimer's Association raising money for their research programs nationwide.
I wish everyone struggling with this disease and their caregivers and families strength and peace.
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@bookjockey - You are most welcome to our Connect community. We are all patients helping other patients, and any help is welcome. You and your sister have your arms full. Make sure that you take care of yourselves too!
Merry
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4 ReactionsThank you, Merry! We are fortunate that we are both on the same page with the caregiving aspect. Losing both to fast moving, wicked neurological diseases is not what we expected. It is not what we would have asked for, but it is what we were given. Mom’s foresight to get long-term care insurance has allowed my sister and me to get more in-home help which allows us more opportunity to be their daughters, and more time to care for ourselves.
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3 ReactionsHelp is what is needed, more so than what people expect. I was my husband's only caretaker but I knew that I wouldn't last much longer doing it myself. This disease takes a huge chunk out of the family and major caretaker.
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8 ReactionsBeing a caregiver is not a pleasant task for sure ! It does take a toll physically on the caregiver and emotionally on both parties . My wife has suffered from dementia about 3 years ( with uncontrollable bowels) for about 10 to 12 months now . She is 77 and I,( her husband) am 79 . We have been together for 60 years married and 2 years dating . GOD has blessed me with the physical and mental strength to do what needs to be done! My most important prayer ,is that I will outlive her so that I can be here for her . My everyday tasks are : nurse..maid .. cook.. bookkeeper.. secretary ( phone answerer ) in one way or another. It does get physically challenging at times as well as emotionally! I find myself getting impatient at times , when that happens i mentally boot myself in the butt and remind myself, that it is not her fault ! It does take an emotional toll on her as well . She sometimes cries because of what I have to do to help her and keep things going ! Remember caregivers , they are feeling the pain of all of this too ! From all that I have been able to research on the subject, it doesn’t seem as any med helps ! We have tried turmeric (did nothing) , lion’s mane mushroom supplements ( also nothing ) . This best advice seemed to be for us to eat certain seafood at least twice a week ( or more ) . Tuna , salmon ,haddock, and a few others are best , and try to get the .... Wild caught variety ! Keep a stiff upper lip LOL !
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7 ReactionsTo Slysi
My wife had the same problem with her bowels, then she went to a Pelvic Floor physical therapist. If you can find one, it will make a world of difference for your wife (and you). My wife continues to do her pelvic floor exercises and it makes a world of difference 👍
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8 ReactionsThanks 🙏 I will look into that! So is your wife having better control over when she moves her bowels? You won’t embarrass me ( or you ) lol , so can you give me more specifics?
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3 Reactionsthe PT worked with her and what ever the exercises are that my wife learned, worked. No more soiled pants.
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5 ReactionsThanks ! We are in the process of getting hooked up therapist now! We have to get referred and are working on that . I do appreciate your posting that info !
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6 ReactionsWe got hooked up! She has an appointment in about 3 weeks ! Again, thanks for the info!
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3 ReactionsFirst time post here but I have been reading the forums for a bit. My Mom was diagnosed last year with dementia and early Alzheimer's. She had lived with my husband and I for years but the amount of care and oversight increased significantly as the illness progressed. I learned what I could from forums and friends that had been caregivers. I did keep in mind that the disease affects people differently. I had to take over Mom's medication after she double dosed herself and ended up in the hospital. She became very apathetic toward everything not wanting to leave the house, bath or even eat regularly. She still recognized people and said she was homesick and wanted to go home to see family and friends. I was able to organize with my siblings and get her home. She passed a couple weeks after I was able to get her home. She was hospitalized with a severe kidney infection. She then had a massive stroke or heart attack. The physician said she had the infection for a long time. This news hit me like a ton of bricks. How did I miss it? Was I not paying enough attention to her? She never complained of pain. It was after that I learned some dementia patients do not register pain like everyone else. She had the kidney infection but was not saying anything about pain or discomfort so I thought she was doing well physically. How does one manage that part of the illness when pain is a sign of something wrong but your loved one does not feel the pain or does not know to tell you.
I so appreciate this forum and the support given. Much pray and hugs to caregivers of those with this disease. It is very draining of energy and spirit to watch someone go through.
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9 Reactions