Tuesday, September 29, 2009

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:

  • Lose most awareness of recent experiences and events as well as of their surroundings

  • Recollect their personal history imperfectly, although they generally recall their own name

  • Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces

  • Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet

  • Experience disruption of their normal sleep/waking cycle

  • Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly)

  • Have increasing episodes of urinary or fecal incontinence

  • 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

  • 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.



Daryl said...

Its very hard unless you can afford to hire private care givers and then make sure to vet them completely so you know you can trust them in your home with your Alzheimer patient

(((Deb))) its no easy path but I know you are strong ..

Living on the Spit said...

I would hope and pray that I have someone wonderful in my life such as you, should I ever be in such a state. You will be blessed for the care you give. I firmly believe this.

If I was there, I would advocate for and with you.

Mauigirl said...

I applaud you for taking care of your MIL - stage 6 Alzheimer's is pretty bad. I think that's about where my MIL was when we finally had to put her in a nursing home. My FIL visits her every day for both of her main meals and helps her eat. She seems to be holding her own since she went in - I think the activities and other people being around actually keep her sharper than if she were still home with my FIL.

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.

Thoughts on Life and Millinery. said...

I've been frankly angry about Alzeimers for the past 20 years, after my friend's Dad suffered with it...she was only 30 at the time. Life magazine did a story about her and her parents, as at the time Alzeimers was just starting to get attention. Knowing the predicted number of people who will likely suffer from it or some other form of dementia as the boomers age...well, sometimes I wonder if it wouldn't be better to have A. than be the one surrounded by those affected.

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.

DesertHen said...

Many (((((HUGS)))) to you!

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!

Country Girl said...

Oh, Deb. I don't know what I can say to help, other than to echo all the comments above. Some very good advice here, too.
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.

imom said...

Such a horrible disease. Your MIL is very lucky to have you and your husband to take care of her, even though she doesn't realize it. There is a special place in heaven for people like you! (((hugs)))

Sue said...

Hi Deb...I had no idea you were your MIL's caregiver...You deserve a huge hug..it must be terribly difficult to deal with on a day to day basis...My FIL is 89 and lives in Jersey so we can only talk to him a few times a week on the phone, he refuses help but I can see him declining very fast..I don't know how much longer he can live alone....and we can get no help from his doctors and lawyers and the state...nobody wants to get involved...when we found last year that his house was almost 100 degrees inside and he had all bad food in his fridge I spoke to his doctor about getting him evaluated so we could step in and the doctor said..."That's his lifestyle choice to live that way and there's nothing you can do about"....same with his drivers license....we can't get anyone to take away his license even though he keeps having accidents....Hang in there my friend...We are all here for you......Hope to see you soon..will you be going to CC's on the 17th?

Laura ~Peach~ said...

i have worked with many alzhimers patients... there are nursing homes with areas just for alzhimers i worked in one and loved it...someone said in a comment that their loved one did better and she is right some do because of the 24 /7 structure (in a good facility) even working there just 8 hours a day was rough at times so 24/7 care is a million times harder... it is a hard decision but as a person who has a parent living in a nursing home i can tell you sometimes it is the best decision all around.
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.

Erika said...

I applaud you for posting these past few posts about my grandmother. It's horrible to see her in her current stage of life but I'm thankful my son will remember his great grandmother even if she is sick. I know that taking care of her weighs so much on your stress levels and your emotions but in due time she will be back at a nursing home.

You and dad are never a burden on me! It's called taking care of my family!

TSannie said...

I'm so sorry you have to go through this - and your MIL does. There is nothing fair about this insidious disease.
You're in my thoughts and prayers.

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