Living With Alzheimer’s Part 3
This is the third post regarding our situation, Living with Alzheimer’s. My MIL was diagnosed 6 years ago and during that time, she has lived with us for 4 years. Let me tell you, it is no easy task. My common sense tells me that she cannot be responsible for her actions, but I ask myself, “Why didn’t we get one that was nice?” I am embarrassed that I even wrote that.
My recent findings on the Internet lead me to an article about the disease that, like anything, there are certain stages in the progression of such disease. A statement that affected me the most was this “Alzheimer’s can be described as the death of the mind before the body…”. This statement in it self is devastating to read, yet imagine living 24/7 watching a loved one. Though Alzheimer’s is considered a fatal disease, the usual cause of death is normally another illness, which develops as a complication in a body already weakened by Alzheimer’s.
Check out the link 7 Stages of Alzheimer's. I’ve determined that my MIL is planted firmly in the 6th stage of this vial disease.
Stage 6:
Severe cognitive decline
(Moderately severe or mid-stage Alzheimer's disease)
Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may:
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Lose most awareness of recent experiences and events as well as of their surroundings
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Recollect their personal history imperfectly, although they generally recall their own name
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Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces
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Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
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Experience disruption of their normal sleep/waking cycle
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Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)
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Have increasing episodes of urinary or fecal incontinence
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Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding
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Tend to wander and become lost
We live each day with the pending decision to place her back in a nursing home. It is a difficult one. One that cannot be made without feeling some amount of guilt. OK, a huge amount of guilt. If my husband and I have learned anything through this experience it is that we never want to be a burden to our children.
Caretakers have no advocate to help them deal with Alzheimer’s family members. Most of our friends do not understand when they ask us to come over for a drink or watch a movie that we can never leave our home. Three and a half hours a week of respite care is not enough to attain any sort of mental health.
Who cares for the caretakers?
Who relieves our stress?
Who watches out for us?
Thanks for listening, my friends. Thanks for listening.
Comments
(((Deb))) its no easy path but I know you are strong ..
If I was there, I would advocate for and with you.
It is a very difficult situation and you'll know when the stress becomes more than you can handle. Don't feel guilty whatever you do, you are doing all you can. Best wishes!
Also, I'm catching up on blogs now that I'm on vacation and saw your post about your weight loss - that's great! You are an inspiration. I need to do the same.
I do hope you find a source of respite care. I know a "stranger" doing respite care is disturbing to the patient, but having the caretaker collapse suddenly (and it happens more often than it should) is even worse.
God bless you, keep blogging as a way to get out of the house without leaving it. And your photo on the header is fabulous!!!
PS: A little tip I recently learned. People invariably turn right when they don't have a goal in mind. This small truth helps a lot with both small children and wandering dementia sufferers who have gotten away somehow. Minutes count...which way should one look from the doorway? To the right...almost always to the right.
Please, if you haven't already, get a non-removable bracelet on your mom with contact information too. It breaks my heart how often we have stories in the news of dementia elderly who are lost..and no one knows who to contact when they are found.
My mother and my Aunt were caregivers for my Nana for many years before they finally had to make that decision to place her in long-term care. Alzheimer's is such a sad and terrible thing! I think it is often harder on the caregivers than the ones who are suffering from the terrible disease!
None of us want to be a burden to our family. It's certainly not something one sets out to do. But stage 6 seems almost too much to take. Oh, my heart goes out to you.
there is a commercial i see often about doing the "right"thing it pisses me off every time i see it because the "right "thing is not always keeping the person at home with the family.
anyway you are all in our prayers it is a hard job that you have and I know you will do what is right for you and your family... wish i lived closer i would come sit so you could have a break.
HUGS
You and dad are never a burden on me! It's called taking care of my family!
You're in my thoughts and prayers.
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