Huntington Beach, CA 1998

Huntington Beach, CA 1998

Words are becoming a little more difficult at times for Jim.

Memories from when we lived in Missouri 14 years ago are muddy.

Dirty dishes are put away instead of cleaned.

The coffee pot is put in the cabinet with coffee still in the pot, growing mold.

Pajama bottoms are worn inside out.

Feet shuffle.

Back hunches.

Handwriting becoming intelligible.

Words are either misspelled or taper off into lines that don’t form letters.

Body parts sometimes shake for no apparent reason.

This is where we are. Where Jim is.

Recently, I encountered someone who is about 30 and knows Jim has Younger Onset Alzheimer’s Disease. As our conversation progressed, she got a little confused.

“So, will Alzheimer’s kill him? Can it kill someone?”

“Yes. “

“But how? I just thought they forgot stuff.”

“They do, but it progresses so that they forget how to chew, swallow, talk, walk and anything else your brain would tell your body to do.”

“So, what do they die from?”

“Alzheimer’s Disease. But they will probably starve to death or have strokes first.”

“Wow. I had no idea. I thought they just couldn’t remember names or got lost all the time.”

Education. It is imperative that we educate our society about Alzheimer’s Disease and other forms of dementia. There is such a misperception and it harms the cause. This disease KILLS people. It KILLS families and fortunes and friendships and careers and futures. It affects every single aspect of a victim’s world. Finances. Emotions.Bonds. Jobs. Homes. Relationships. Pride. Self Respect. Mental sustainability. Any aspect of living and breathing, this disease WILL have a direct impact on it.

As a friend said to me today, “ If there was something the devil himself could devise and a disease he would come up with, this would be it.” She is right. It is long. It is heartbreaking. It is torturous. Literally. Torture.

Jim and I have been having some heartbreaking conversations lately. We have met again with our attorney. We have discussed funeral stuff. We have discussed care arrangements. We have gone over options for our family as he progresses. It is emotional and gut wrenching. We had to order him a new passport and while filling out the paperwork he couldn’t recall his mother’s birthdate. He got confused and thought he might be cured. He realized that wasn’t the case and cried. He doesn’t want to leave us. He doesn’t want to leave his children. They mean the world to him. But he doesn’t necessarily show that these days. He seems to be able to only focus on one simple task and that will cause him to ignore anything else in the picture. Even if it is the children coming home from school or asking him a question or telling him they love him.

I really, really hate watching him slip away from us. If there were a way to feel like you are in purgatory, wouldn’t it be to take your loved one away, one cell at a time?

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

11 Responses to “Torture”

  1. Wendy Sweigert says:

    as sad as it was to read my mom’s death certificate, the doctor at the SNF put down she died from Vascular dementia/Alzheimer’s. Funding for research was largely based on cause of death. Rarely did doctor’s put down dementia as the cause. This has got to change.

  2. Joe can’t talk. His vocabulary is gone. He doesn’t really know me I think he has a feeling of closeness from being together for 63 years. He ask for his mother and I tell him I’m right here. I know God will give me the strength and patience I need but I wonder how much longer will it be Joe began his 11th. year in Nov. I go to sleep thinking of him and all through the day he is on my mind. For my emotional and physical I can’t stay with him every day but I feel guilty when I leave to go home. I think I’m ready I know I am ready for this daily torture to end but am I? Karen, you are a stronger person than I am. May God hold you, Jim, and your children in his arm.

  3. Allan Schur says:

    Sad to say, even the Alzheimer’s Association perpetuates the stereotype. They almost never mention “Younger Onset”, for example. I have not seen them do anything to fight the belief that Alzheimer’s really is only a memory disorder that affects people who are going to die soon of old age anyway. We NEED to find a cure for this terrible disease that kills people in horrible ways. Until the general public SEES what this disease is and does we’ll never have the AIDS-like research that MUST happen to find even a treatment. It will take people like you, Karen, to give them the sense of urgency they just don’t have. They don’t listen to me because, after all, what do I know? I’m just a Man (strike one) whose wife has Younger Onset (strike two) and is in hospice so I can’t travel (I NEED to be with her as much for ME as anything else) to meetings (strike three – I’m out) I LOVE my local chapter but the National Organization – not so much. Someone told me a few years ago when Sharon was at about the same stage as Jim: “Your worst day today will be your best day not too long from now.” Sad but true. You are in the prayers of many…. including mine. Stay strong!!! Remain strong for all of us who are in the foxhole with you.

  4. Maureen says:

    I don’t think I could ever talk to my husband about these issues. I couldn’t bear the pain of him knowing what he doesn’t know. Instead we live each day without regret. He, also, has all the symptoms you described. I will pray for all of you. Love, Maureen

  5. norm says:

    A story about my buddy Cliff. We have a National Guard training base near my home, they advertised for locals to come and act out the part of civilian disaster victims. I took Cliff with me to see if he could participate and earn a few bucks. The recruiter was a little nonplussed when he found Cliff could not write his name for the paperwork, I mean he looked so normal. We had a great time with the guardsmen, we had a code word, ‘real world’ when it got a little too real. It was good training for the young people to see a big bull of a man, who walked fine, talked almost fine but could not take any direction . The recruiter thanked me a number of times for signing Cliff on to this last paying job he had before he died. He was gone in less than six months from our adventure at the military base.
    Cliff had a DNR, we were doing outings, hikes and what not up until three days before he fell into a coma. The hardest thing you will ever do is not call the 911 number when your man falls into that coma.

  6. Kathy Taylor says:

    We are exactly where you are! Praying for everyone affected by this devil disease!

  7. Jeanne Sapia says:

    I have known Jimmy for many years and it is breaking my heart to see this horrible thing happening to him. I am praying very hard for him and your family. I am praying for a miracle, I know they are few and far between, but they still happen. I am also praying for a cure for this horrendous disease. Stay strong and BELIEVE,

  8. I grew up with Jimmy on and off through the years. He lived behind my Grandmothers house. My Dad was in the Army and we would get to visit, and sometimes live there once in awhile. I and my wife were both in the air Force as well. Jimmy convinced me to go the the 20th class reunion at Manchester High. He was one of the very few people who remembered who I was. Our family is praying for Jimmy and for the cure. Hang in there buddy!

  9. Andrea Spencer says:

    If you replace your husband’s name with my husbands I would think you were writing about his current symptoms. You are not alone. My husband is 49 and we have two children still living at home. Like another who posted one here, Maureen, we take each day one at a time and try to keep an upbeat positive attitude. It will be much harder once Jeff is in the advanced stages, but we’ll deal with that when it’s here. I find it too overwhelming and depressing to think too much about what lies ahead. Isn’t it sad that I feel that Norm’s friend, Cliff, was incredibly fortunate to have passed away in a coma just 6 months after he was still functioning well enough to participate in the event mentioned?

  10. Lee Ann says:

    The term, “The long goodbye.” is quite appropriate. Even, God forbid, terminal diagnoses aren’t as damaging and as much of a struggle. It really hits home when reading these blogs about the difficulties caused by Alzheimers and other dementias.

  11. Hello,

    Just came across your blog!

    I am a young(ish!) caregiver to my mother-in-law with dementia – I have a site about it as well at http://www.dementiapoetry.

    Please feel free to stop by!

    DG x

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