Alzheimer’s — an endless stream of loss and decisions

Before my dad got Alzheimer’s I knew others whose parent had it.  I’d ask out of concern and compassion, “Does she still know who you are?” That was about the extent of my knowledge of Alzheimer’s—people forgot who their loved ones were.

What I didn’t realize is that Alzheimer’s is about so much more than that. The loss of recognition may be one of the last pieces. Before that, systematically, step by step, a person with Alzheimer’s loses the pieces of their lives.

Mom can’t find her car in the parking garage. Mom can’t find her way to where she wants to go. Mom can’t drive anymore.

Dad puts his head in the armhole of his shirt. He’s dressed for church and it is Wednesday. Dad tries to put his shirt on upside down. Dad can’t dress himself anymore.

Grandpa sanded the finish off the edge of the kitchen table. He carved into the wood with a knife. He took a pair of scissors and cut the emblem off of the middle of the shorts he was wearing. Grandpa can’t have sharp objects anymore.

Mom turns on the stove, turns off the answering machine, turns on the bathroom heater with towels draped over it. Mom can’t be alone in a room anymore.

Grandma has both types of incontinence. Grandma has accidents at inconvenient places. Grandma can’t go to unessential places anymore.

Mom drops her pills on the floor. She hides them in her uneaten sandwich. She can’t swallow them whole. Mom can’t take pills anymore.

Grandpa has trouble chewing and swallowing some foods. Grandpa can’t eat steak anymore.

Grandma “pockets” the semi-chewed foods she eats in the side of her mouth. Specialists consider this a choking hazard. Grandma can’t eat non-pureed food anymore.

We made another decision yesterday and took another step with Dad. Mom is investigating visiting physicians who can come to the house to care for Dad. Yesterday we met with a nurse practitioner from the VA, and a visiting physician from a private practice.

The VA has a program for vets called In Home Prime Care. A nurse practitioner came to my parents’ house to explain the program. They have a team of specialists that includes a nurse, nurse practitioner, social worker, dietician and psychologist. They visit patients in their homes and try to take care of their medical needs including prescription refills. They are not able to come for sick visits, however. The patient needs to visit the VA hospital for most procedures. The patient receives a visit from the nurse once a month and from the nurse practitioner once every three months. The social worker makes an initial visit and assessment, as does the psychologist. The dietician can be consulted as needed.

The visiting physician came with two medical assistants. They did an initial assessment of Dad: took his history, his vital signs, and recorded his medications. Because they travel a scheduled route, if you are sick, they will try to help you over the phone and are often able and willing to order prescriptions this way. They can send out a nurse or diagnostic equipment like an x-ray machine. Otherwise you have to visit an urgent care or hospital. The physician likes to visit once a month at first, but later can be seen at least once every three months.

I don’t know what my mom is going to decide to do, but she seemed to like the doctor who visited.

The only place Dad has gone this past year has been to doctors’ appointments. So if he stops going to those, he will stop going out. Anywhere.

Dad can’t go anywhere anymore.

30 thoughts on “Alzheimer’s — an endless stream of loss and decisions”

  1. Christine….this must be so difficult for you and your mom — I feel so inadequate writing platitudes to you. I am thinking of you, my friend, wishing you strength and peace when you can find it. You are doing such an incredible service to others by writing these words, sharing these experiences, giving strength to others. I admire you so much.

    1. I’m not sure I’m worthy of any admiration. We all just do what we have to do. I’m caught in this particular quagmire with my family, but many others are fighting their own battles. It’s part of the human condition.

      Thanks for the strength and peace. I am in sore need of both.

      1. I understand — but I think and hope by writing about it that others might learn they aren’t alone. (Not to mention that you are educating some of us (me) about what might be ahead and just about the disease in general.)

  2. The “assistance” you describe is so meager it is almost useless. I see how exhausting and demoralizing it can be. Both my parents approaching 88. Things OK so far. I don’t know how I will manage with no siblings, family or friends to help, if and when the time comes.

    1. I know. It’s all pretty disappointing. I hear you, Carl. You may have to rely on other people and perhaps the government, such as it is, for help.

      It sounds like you are very caring and generous. I think you will manage.

    1. You’re right. Thanks for your prayers, LeRoy. We’re doing okay. We’re finding our way. This disease just doesn’t give you a chance to settle and rest for a minute. The march forward is relentless.

  3. Christine,
    Thank you so much for sharing your journey with us. The final step towards my Dad’s diagnosis was when he got lost driving to meet friends for a lunch that didn’t exist. Ran out of gas, and started walking “home” in an ice storm. I am not close enough to witness his other losses on a regular basis, but a I know they exist and they are coming. It helps to hear how another person is dealing with the experience. So in that sense, in regards to your memoir question of a few days ago, your story helps others. I, for one, am truly grateful.

    Hugs, Lisa

    1. Thanks, Lisa. Thanks for sharing your story. The loss of good judgement is a big early indicator, I think, although a difficult one to recognize.

  4. Losing parents and siblings bit by bit is harder than losing them in one fell swoop. A heart attack to bring it all to an end would be far kinder.

    1. My FIL got to the point that he could do nothing but stare at us ~ he couldn’t swallow food, drive, go out, dress, communicate, shower.

      When he got pneumonia and died, I found it hard to be sad . . . I’d already said good-bye.

      1. Thanks for sharing your story, Nancy. Something that’s come up a couple of times that concerns me and I haven’t thought about is feeding tubes. The doctor yesterday asked if we thought about our attitude about a feeding tube. Did your FIL have a feeding tube when he couldn’t swallow food?

        I really don’t like the idea of a feeding tube. I’m going to do a post about it. Dad is still able to swallow right now.

      2. I don’t remember a feeding tube. He lost the ability to swallow close to the time he developed pneumonia. It’s fuzzy . . . and, frankly, I prefer it that way. I just remember the haunted look in his eyes.

  5. My heart and prayers go out to you and your family, Christine. Praying for wisdom for your mother’s decision. Thank you for sharing your story. One never knows who will hear or read those words and be helped.

  6. All of the symptoms you’ve pointed out ring true in my husband’s Alzheimer’s experiences. He once drilled a hole in the pocket of his pants with a Phillips screwdriver. He worked at it for a long time until he accomplished it. I wasn’t expecting anything like it at that time or I would have intervened. Difficulty swallowing has been an ongoing issue lately.

    My husband has added seizure and stroke to his Alzheimer’s, not by choice, of course. The last leg of his journey may bring him more understanding of God’s redemptive love than any other season of his life.

    Like other hard times of our lives, we cannot appreciate any gain until much later, and maybe not until we reach Heaven. Perhaps God takes our entire lifetimes to prepare us for graduation day and our eternal future, where pain and sorrow are no more, except for becoming the substance of discussion among us and the reason for praising our God for His redeeming love forever. Blessings to you, Christine…

    1. Thanks for sharing your story, Carol Ann. Some of the things people with Alzheimer’s do are bizarre. I sometimes think, “Why would he ever think to do that?” It defies explanation.

      Dad is starting to have difficulty swallowing, but is still able to eat and drink pretty many things. He does “pocket” food in the side of his mouth and my mom has to check for it so that he doesn’t lie down with food in his mouth and choke on it.

      We believe Dad may have also had a stroke. He has weakness on his left side and we were told that the fact that he cries so easily and often can be a sign of a stroke.

      Sometimes it’s the belief in, or hope for, an afterlife that is the only thing that comforts me. It helped me get through my sister’s death, and I know if it is possible to be reunited with loved ones in another life, Dad will be very happy to see Annie again. That keeps me going.

  7. This post made me shudder and then ache in my heart. You have a gift of communicating such a sensitive issue in a way that the rest of us can benefit from…after we dab away our tears. Thank you.

  8. You are an amazing person. Unless one visits your blog regularly, one would never know the burdens you shoulder. Your generous comments left on others’ blogs, belie your daily struggles with your dad’s Alzheimer’s, and your mom’s role as his primary caretaker.

    please know you’re in my prayers…hugmamma. 😉

    1. I have my days, believe me. It is hard to keep my spirits up at times. My mom is the amazing one caring for him day and night seven days a week. She has some help, but mostly it’s on her shoulders.


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