The Alzheimer’s roller coaster ride

My sister Carol has been staying at my parents’ house for an extended visit. Yesterday morning  her Facebook post (dated 16 hours ago) said,

“My Mom and I just had to call for emergency help because my Dad who has Alzheimer’s and weighs about 220 lbs.~ couldn’t stand on his feet and ended up sitting on the floor in the bathroom. Four men came quickly to our service and had dad up and in his wheelchair within minutes.”

I did a quick calculation and figured out this happened about 4:00 in the afternoon the previous day. This was the first I’d heard about it. I called my mom and Paula answered because Mom was catheterizing Dad, as he, and now she, has had to do three times a day since his radiation treatment for prostate cancer over 10 years ago. This is one procedure the home health aides from the service we employ are not authorized to do. Paula and I talked on the phone for a few minutes about yesterday’s incident, hospital beds, and whether Mom should even be trying to move Dad around by herself anymore.

I don’t think we’re alone in this situation of wondering when enough is enough. I think this happens to a lot, if not most, people at this later stage in life. When is it time to let go of something, and move on to the next stage in life? When is it time to give up the car keys? Give up your home and move into an apartment or assisted living facility? Give up your keepsakes and downsize? Put Mom or Dad in a nursing home? When is enough enough?

Sometimes I wonder if Mom and Dad wouldn’t be better off if Dad just stayed in a bed. Mom wants him to be able to get up as long as he can. And some, even probably still most, days he can. But more and more there are questionable days about whether or not he should be. And yesterday he went down in the bathroom. Fortunately he slowly dropped to the ground while Mom had a death grip on his clothing and was able to protect his fall. He basically just slowly sat down on the floor.

The paramedics came and without much to-do promptly got him settled back into his wheelchair.

Linda, their evening home health aide, made levity out of the situation when they told her about it. She said, “I know you and Carol. You just wanted to get yourselves in that small room with those four fire-fighters.”

Being able to laugh is what saves us sometimes.

I had planned to go visit my parents yesterday anyway so I adjusted my plans to come later and told Mom I would be there by the time she needed to get Dad up from his afternoon nap to help her. I stopped and picked up dinner for them because I knew Mom was struggling and I wanted to give her a break on making dinner.

Yesterday Mom and Dad’s afternoon’s trip to the bathroom was uneventful. Afterwards, when Dad was settled in his wheelchair at the kitchen table he looked straight at me, fully alert, and said, “Which car did you drive up here?”

Which

car

did

you

drive

up

here?

Seven words.

And for one short, glorious moment, I was the one who was speechless.


34 Comments on “The Alzheimer’s roller coaster ride”

  1. Beth Ann says:

    An unexpected event made your day, didn’t it? How strange that 7 words would have such a profound effect on you and on your readers today!!! Glad your dad did not hurt himself and that you guys were able to find some levity with the home health worker. That is surely something that you have to learn to do. Have a blessed day today, Christine. Your life is so complicated these days and I just wanted you to know you are in my prayers.

    • CMSmith says:

      Thank you for that, Beth Ann. Sometimes I wonder if the rest of my life is going to feel this way, about loss. It seems like when we were younger and our children were young, life didn’t feel at all like this.

      • Beth Ann says:

        Oh I totally understand!! Now it is all drama and loss and grief and sadness at times that swirl around us. Just found out yesterday that the father of a good friend of ours died in Feb when we were in the same town and did not even know it!!! They didn’t think to call or email us…..makes me so sad that we missed the celebration of his life when we were right there. Life gets busy and complex sometimes and even tho I hold friendships dear I wonder if others put the same emphasis on it that I do.

      • CMSmith says:

        It’s good to know I’m not alone.

  2. So powerful. My mom is sounding more panicked lately, more frustrated with the deterioration. She was upset on the phone the other day because, for the first time the whole family is close enough to celebrate Passover together. “Sarah needs to see a family seder,” she said. (We have thrown seders but not as a whole family). “But . . . I can’t handle it.” I can do it, I told her. “No, I won’t bring your Dad. He can’t do things like that anymore.”

    Reality sinks in.

    • CMSmith says:

      I’m sorry you and your family are having to go through this slow loss, Lisa. As daughters and sons, the day comes when we have to step up, I think. I hope you will be able to find a satisfying way to celebrate Passover.

  3. Oh my…yes, laughter must be your only friend right now. Seems cruel when aging spouses have to overextend themselves on a daily basis. Thank God your mom has help from you and your sister. Hugz and prayers are sent your way…

    • CMSmith says:

      It does seem cruel. Mom is working harder, physically, now than she ever has. It frightens me sometimes. I hope she can make it through this. Thanks for the hugz and prayers.

  4. suzicate says:

    Bittersweet; sometimes hope and milestones come in small ways. Glad your mom and sister were able to get assistance quickly,

  5. Cathy says:

    I am re-reading “Dancing in Heaven” and it seems like you are back in the same spot. These questions of when is it time for … (insert next step here). It is good that your mom has such great support.

    • CMSmith says:

      I’ve frequently thought the same thing: we’ve been here before. Maybe there’s a message there about lessons to be learned. . .Anyway, just yesterday I got a small piece of aluminum foil out of a drawer and asked Mom if I could use it, or if she was saving it for something. She said, “I use it to put over Annie’s pudding. I give Annie pudding every day for the medicine.” Well, actually she gives Dad pudding every day. I’ve heard her misspeak before and call Dad ‘Annie.’

      Mom went on to correct herself and say, “I’m doing that more and more. I’m always referring to him as Annie.”

      It was a little disconcerting when it first started happening. Now that she can talk about it, it doesn’t seem quite so bad.

  6. NICE! (But wow, what a roller coaster to get there…) You’re so lucky you have such a strong family. Sending hugs your way, friend.

    • CMSmith says:

      I’m not so sure our family is all that strong. We’re just in a situation where we have little choice but to do what needs to be done.

      Thanks for the hugs.

  7. frangipani says:

    Your dad is well-looked after by all of you. Wishing you better days ahead. Although it might be better to leave him in bed, it was getting him out that gave you that lucid question.

    • CMSmith says:

      My mom is doing a terrific job of caring for Dad, and the home health aides are too.

      You are exactly right about getting him up. There may be some kind of compromise.

  8. starlaschat says:

    I remember Aunt Lenny who use to always say “there’s just some things I just need to accept.”
    Seems at each step giving up her car giving up her house each step always seemed to be a surrender a letting go. I know it must be tough as a person lets go each step, step by step.

    • CMSmith says:

      Sounds like your Aunt Lenny was very wise. It is all about giving up or surrendering. And unfortunately, most of us will have to do that at some point in our lives. Maybe we already are a little bit.

      Seize the day.

  9. Christine–it’s comforting to know that we are not the only ones going through this. It’s helpful sometimes . . . We are also telling our 93-old dad to let mom (90) to just stay in bed. But the phonecalls she makes at all hours of the night to my brother- and sister-in-law’s homes are starting to wear them thin.

    • CMSmith says:

      I think it’s helpful, too, to know we’re not alone. But just the other day as I was wondering how long I will be able to keep this up as Dad’s condition worsens. I’m just not sure I’ll be able to continue to write about it live. We’ll see, I guess.

      It’s exhausting having elderly parents. My good friend had to take turns with her siblings staying overnight at her parents’ apartment until they could get them settled into a nursing home. Her dad got up every 20 minutes or so to go to the bathroom all through the night. They are both in their 90s. It’s just so hard.

      Stay strong. One day and one problem at a time.

  10. I know from reading your memoir that your Mom is willing to take on and manage a huge amount. Bless her heart. Bless your heart. God bless your dad and all of you. How thankful you must be for those 7 words. I can’ even imagine, Christine. You all are in my heart and prayers, my friend!
    Hugs,
    Kathy

    • CMSmith says:

      It’s always like a miracle when he says something so cohesive, so pertinent, so now. It’s like he’s back from the dead almost. It’s unsettling, but a wonderful gift.

  11. Alzheimer’s is unpredictable. The landmark events you mention seem to happen long after they should have. At least it was like that with us. Giving up the car keys was a big one. I know your mom appreciates you and Carol. Blessings to you…

    • CMSmith says:

      I know my mom had a lot of trouble getting the keys from him too. And you’re right, we usually wait until the bad thing that might happen, does, and then we decide it is time to make the change. The other tragic part is that the loved one who takes away the keys is often viewed as being mean to the person with Alzheimer’s. They’re the bad guy. Mom is the one who’s had to take sharp objects away from him after he carved into the ktichen table, or cut a whole in the front of his shorts while wearing them. Then she looks like the bad guy to him. It’s tough.

      I hope things are going well for you, Carol Ann. Blessings.

  12. benzeknees says:

    You have a lot on your plate & it’s nice to see your blogging friends supporting you. Alzheimers runs in my family too & there are a lot of tough days & a few to be thankful for.

    • CMSmith says:

      My blogging friends are the best. Since I don’t work, and have recently moved to a neighborhood where I don’t know many people, I really appreciate my blogging friends.

      Well, it sounds like you know exactly how it is. Thanks for stopping by and commenting.

  13. Robin says:

    I often wonder if this is the “wisdom” we supposedly acquire as we grow older — having to pass through the fires of illness and death of loved ones before we start falling apart. Yet I know from watching my mother-in-law before she had to be moved to assisted living and then a nursing home (for her dementia) that even having passed through these challenges, we can still have difficulty answering the questions you posed, for ourselves as well as for others.

    I’m so glad your father’s fall wasn’t serious. His words must have been quite a surprise.

    • CMSmith says:

      Maybe. You might be right about the wisdom. It’s a heck of a thing to have to learn.

      My mom had to go through it with her own mother – the dementia, the nursing home. She agonized over it. She beat her head against the wall trying to find things for my grandmother to do to occupy herself in some meaningful way.

      Now she has my dad. At first it didn’t seem like she had learned anything from the previous experience with her own mother, but now she often seems like she’s got it, better than me sometimes. We all have our blind spots, I guess.

      His words were a miraculous gift, as they always are.

  14. your honesty, your compassion, your heart ache takes my breath away! I can only ask that you and your family all be wrapped in the grace of compassion.

  15. Just the kind of words you wouldn’t expect to hear either!

  16. pattisj says:

    So happy your father rendered YOU speechless! What a wonderful surprise!


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