Alzheimer’s Symptoms – I Wish I Knew Then

Alzheimer’s Symptoms – I Wish I Knew Then

Soooo many things I wish I knew then, that I know now.  

  • checkBailing someone out of debt will not solve their problem
  • checkBe sure to make life decisions for YOUR life; not the life someone else says you should have.
  • checkYou will likely be parenting your parents

There aren’t many things I’d say I would do differently, because I really love my life. I’m a firm believer that every decision you make, good or bad, is critical to leading you to the place you are now. Still, of all the “I wish I knew then what I know now” moments, #3 above is the one for which I’d risk the present, to redo the past. 


Aging Parents

Caring for aging parents is full of stories of lessons learned and love. This one is about my Mom. For several years, particularly the last 18 months of his life, my Mom was the full-time caregiver for my Dad. He had congestive heart failure (CHF), which means his heart didn’t pump properly, so fluids would build up around his heart and lungs causing him to be (among other things) severely out of breath, weak and overall cranky.  

Dad was able to get around with a walker (when he finally would use the damn thing), get himself out of bed, shower, and to his recliner every day. The last year we had visiting nurses and hospice come in a few times a week to help him shower, etc., but it was still Mom who was there with him 24/7.  That’s a load for anyone, much less one who is 80-something.

So when Dad told me “Your Mom is losing it.” I chalked it up to the stress of her life, caring for her dying husband of 50+ years. 

I hadn’t really seen much that I would have thought was out of the ordinary, given the circumstances we found ourselves in.

In full disclosure, my Mom and I did not have a great relationship. I love my Mom. We were never estranged or feuding, but we weren’t mother-daughter best friends. My sister Karen and Mom were much closer. Mom and I would butt heads on almost everything. I think that played a part in my not seeing some of the changes because what she was doing was annoying and I thought I was just letting old wounds surface. I should have stepped back and recognized the changes.

Alzheimer’s Symptoms – Hiding in Plain Sight

For one, Mom would start reading signs as we drove.  “Belt Line Road”.  “Dominos Pizza”.  “Exit 423”.   No conversation.  Just reading signs out loud. She was doing this for a couple of years before Dad got really bad, not regularly or anything that would make me thing anything other than… “ok, so… I wonder if she wants pizza for dinner.”  I assumed she was in her own thoughts and just said something out loud that fit in with whatever story she was lost in. As time when on, it got more frequent.  Still, not enough to think it was anything other than Mom being Mom.

One night we were sitting in the living room and I started to smell something terrible. Having had more than a few plastic containers fall from the dishwasher rack onto the drying element, I knew that smell was plastic melting. Mom had put a plastic pitcher on the stove and turned on the burner. But… anyone can have a senior moment, right? An 83-year-old woman under that kind of stress; right?

But here’s the kicker: Mom stopped doing crossword puzzles. Every morning; every single morning for as long as I can remember, Mom had her coffee, breakfast and that day’s crossword puzzle, sitting at the dining table. They had the Dallas Morning News delivered well past the time most folks switched to digital, in large part because she wanted the crossword puzzle (and Dad wanted the “funnies” aka: comics).

One day I noticed Mom wasn’t doing the puzzles anymore. I’m not sure when she actually quit, but I noticed it near the end of Dad’s life. Again, there was so much stress and sadness in what was happening that we didn’t focus on it.

If Knew Then What I Know Now

I wish I’d focused on it.  I wish I’d focused on all of it. They were all signs of her progressing Alzheimer’s.  It didn’t get bad enough for us to actually recognize something was REALLY not right for another year. By that time (after discussing with Mom and everyone agreeing) we’d sold the house, moved Mom into a senior living apartment in another city completely disrupting her life and taking away anything familiar—all the very worst things you can do for someone with Alzheimer’s.  

What would I do differently? Until Dad passed I don’t think I would have done anything differently. After, I would have admitted the things that had been happening may NOT have been only stress related and scheduled an appointment for Mom.  I would also have tried very hard to discourage a surgery she had later that summer after Dad died. Anesthesia is something all seniors should try to avoid, AT ALL COSTS.  It was a nightmare experience for Mom. I don’t think she ever recovered back to her pre-surgery self and the dementia seemed to really advance after.

Everyone is different.  There are many, many forms of dementia and Alzheimer’s presents itself in varying ways. This is my story.  I’ll welcome questions or comments about my experience, but please know that I’m not a medical professional. I’m just a daughter trying to care for her Mom in the best way I know how. I have to say, also, that my sister Karen is my best friend and lifesaver and she and I are in this together. I cannot imagine being an only child with this responsibility. I cannot imagine being an only child, without my best friend—period. 

Thank you for listening. I feel like I’ve just had a therapy session.  Here’s to the HaT Tribe and to sisters.  XO

Barb Here:

My heart goes out to Lynnelle and to all who have family members suffering from Alzheimer’s. It is a horrible disease that robs one of all that is precious from doing a simple cross word puzzle to remembering loved ones.

I, too, have stories about caring for my elderly parents but my parents have been gone for over 17 (Dad) and 20 (Mom) years, now. Remember the WTF weight post? My adult weight gain was at its worse during my mom’s final two years and I, too, have some regrets. Most of all, I regret that they were taken from me when I was young (I now feel that under 45 is very young) but I also regret things I did and things I didn’t do. There are three life lessons I have tried to remember:

  • checkWe’re human, so we’re bound to screw something up every so often. As long as we’re acting with love and to the best of our ability in that situation, we need to forgive ourselves. 
  • checkI never, ever failed to show them how much I loved them. Oh, Mom and I fought-likes the time I had to drive two and a half hours to the assisted living center because she made a care-giver cry.  but we also spent wonderful times together laughing, telling stories, and listening to the kind of music she used to enjoy at the Grange Hall dances.
  • checkOnce we’ve been through this (or any challenge) we need to take the time to listen to others and give them hugs and support. Note I didn’t say “advice”. Sure, if someone asks and you have the answer or can do the research, help them. But what we who are becoming caregivers to those who diapered our butts really need is the love, hugs, and the reassurance that we’re doing the best we can and for all the best intentions.

Lynnelle and Karen and all who are aiding, loving, and actively assisting your parents, never forget you are heroes.

7 thoughts on “Alzheimer’s Symptoms – I Wish I Knew Then”

  • I am currently full time caregiver to my 93 year old mom who has dementia. For years she had done jigsaw puzzles daily but that stopped earlier this year. She has also given up reading as she can’t get the continuity of the story and quit knitiing as she forgot how. Sh e spends her day doing word find books and seems to be pretty happy as long as she can look up to find me there. I have had to change my life dramatically. We were very much outdoor people who loved hiking and golf but get very little time for that right now. I have taken online classes in cookie and cake decorating and have found I have a flare for it. I used to spend hours in my craft room quilting, but now am hand piecong a heir quilt so I don’t have to leave her. I am blessed with a wonderful sister who lives close to me and comes in from time to time to give me respite. She also takes mom for a week twice a year so my husband and I can enjoy a bit of our retirement. My husband is amazing with my mom, sitting with her if I really need to get away for a couple of hours, teasing her and keeping her laughing, and running errands for me. I don’t know how anyone can do this without a grreat support system. I was a senior banker in corporate banking for thirty years and then CEO of a charity for ten, but this is definitely the toughest job I have ever undertaken. I am seventy and pray for the stamina to keep on as long as I am needed.

    • Edna, Thank you so much for sharing your story. Your Mom lives with you and your husband? That is so wonderful you’re able to have her there, yet what an overwhelming responsibility. My Mom lived with my sister and her husband for almost 5 months. They both work full-time, had someone come into the house to be with Mom 8-5 but the situation was not sustainable. I applaud you and your husband. Of course, that is the very best situation for your Mom, yet the most difficult of all for you. Like having your first child, your world is turned upside down never to be the same again – this experience defines you in ways you never knew possible.

      Have you considered the in-home care service? If it’s in your or your Mom’s budget, having someone not related to you come in regularly for a few hours a week may give you even more comfort, not having to feel you’re imposing on anyone. I understand totally where you are and send support and hugs virtually. I’m glad to know your story. xoxo

  • My Father is currently going through early stage dementia. Like your Mom, he stopped doing his crossword puzzle, stopped reading his Tom Clancy novels, wandered off while my Mom is shopping, making erratic driving errors…that kind of thing. I have two sisters in medicine and I am a trained counsellor, we all noticed a slow decline, especially after he had a medical challenge. My Dad is a tough old bird, he has survived war, insolvency, four bouts of cancer, heart attacks, quadruple bypass, bad kidneys, diabetes, many back operations. You get the idea, his body will not be giving up easily. Mom and Dad live in a senior’s oriented building, their physical plant is made for older people, and Dad is used to his home. They are considering going moving to a place here Dad can get more help more often, and Mom can get some respite. Right now, we have arranged for Mom to have a cleaner for the heavier housework, she volunteers at the Senior’s Center once a week. She needs a break from Dad more often. Right now, he’s okay to be left alone, in his own home for an hour or two with his soccer games but that will not be the case forever. We’d like to get him into a routine where Mom can safely go out and he has a minder whom he knows and trusts. I’d volunteer but I live up North, two of my my sisters work, and another is recovering from breast cancer. All the grandkids work. How can we make this easier for both my parents?

    • Catherine, there is no good, easy or economical answer. It is a terrible situation for everyone. The only thing I can do is describe what I’ve learned and hope that gives you and others comfort, insight and maybe confidence in making the right decisions for your situation.

      Your question was “How can we m make this answer for both my parents?” As you mentioned, your Mom is able to get out, I’m assuming regularly, to do some volunteering at a Senior Center, which is great. I’d also think that getting out and spending quality time NOT focused on caring for others would be very important. Not knowing where everyone lives in relation to your parents, perhaps one sister could take your Mom to lunch on one weekend, another take your Mom to the movies, a walk in the park, shopping, etc. on another weekend, and so on. Getting out of the house and spend time NOT having to make decisions should be a relief for her.

      Also, the help cleaning is good. Looking back, if I had to do it over again (and Mom wasn’t the one with the dementia problem, I’d have arranged for in-home care to come in. If your Dad is still in good physical condition and doesn’t need help getting around or showering, etc. have an in-home care provider (Visiting Angels, Right At Home, Home Instead) come in a couple of times a week to just sit with him. (These care companies generally cannot provide care where the individual needs to be “touched” – lifted, etc. That is considered medically related.) They can make his lunch, do light housework while there, play cards with him, etc. Unfortunately this service isn’t inexpensive, but when compared with the increased cost of assisted living vs senior living, it can be much less. That’s an entire post in itself – assisted living. I’ve got STRONG opinions on that, too. (But I bet you knew that)

      From my perspective, helping your parents is making sure your Dad is safe and your Mom has support and is staying healthy. I hope this has been somewhat helpful. It’s just so difficult and so expensive. I wish you much luck and send love and hugs. Please keep us posted.

  • Thank you for sharing. ?. This must have been hard to write, but know it matters and your courage in putting it out to the world makes a difference.

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