Why didn’t my doctor tell me? — or who’s taking care of the Alzheimer’s?

This is the question my mother asked when the physical therapist left my parents’ house yesterday after working with my dad for about 45 minutes. “Why didn’t Dr. R ever tell me your dad might benefit from physical therapy?” she asked.

Gee. I don’t know. Maybe he was too busy prescribing antibiotics, inhalers and cough medicine.

In Dr. R’s defense, after the initial diagnostic appointment when my dad started having noticeable memory problems and a neurologist was consulted, an MRI done, and ultimately Aricept prescribed, my parents never really sought medical advice about the Alzheimer’s. And apparently, over the several visits they made to the doctor’s office for one thing or the other, the topic never came up.

In truth, it never seemed like Dr. R was monitoring Dad’s Alzheimer’s treatment nearly as well as he was monitoring his cholesterol levels.

It’s like the walker Mom bought for Dad at the medical supply store where they have been good customers for years. No one explained to her how high the handles of the walker should be. She just brought it home and Dad started using it.

Yesterday when the physical therapist was there helping my dad walk around the house with the walker, he asked, “Did someone raise these handles on purpose?”


“Handles should be the height of the wrist of the person when they are standing upright with their arms down at their sides,” he said.

Dad’s handles were about five inches too high. Sometimes I feel like we are wandering around in a fog.

The medical industry is not kind to people who try to be self-sufficient.

In an earlier post I wrote, “Sometimes when we try to get help for Dad I feel like we are a ball in a bumper pool game. One professional evaluates and then bumps us to the next.”

Dad’s been diagnosed with Alzheimer’s for nearly three years now. It just seems like someone, somewhere along the way might have pointed us in a forward direction every now and then. Fortunately, we finally bumbled our way into the visiting physician, which led us to the visiting nurses, who set us up with the physical therapist, who believes he can help Dad improve his walking and movement. Who knew?

Time will tell, I suppose. And we will have to keep up with the exercises or Dad will backslide. But at least we have a small hope that one of these things afflicting Dad may turn around and start getting better instead of worse. I say, “Halleluia.”

Mom says, “Why didn’t anyone tell us before now?”

December 2010 — My dad uses his walker (before proper height adjustment) to visit family gravesites.

23 thoughts on “Why didn’t my doctor tell me? — or who’s taking care of the Alzheimer’s?”

  1. Hi Christine .. we’ve a Dementia Unit on the ground floor where my mother is .. used to be Nursing Centre (as is my Ma) .. and when they opened it the Director bought with him a book he’d written – short stories (examples) of different people’s way of dealing with the disease, or onset .. it is very interesting …

    As with my mother – no-one tells you … you need to ask and in fact we as relatives need to be pro-active, not reactive … most people (most!) are reactive, even in the profession – they don’t think .. and they just do or give or sell .. without that little extra – that’s what humans are meant to be about .. going the extra mile – could be a little instruction, an idea etc etc ..

    I’m still shocked/surprised at what I need to ask .. or just pre-empt and do ..

    If you want the title of the book – it’s on my post – search for Alzheimers .. it’s with some other info .. just before the A – Z challenge ..

    It’s a difficult time getting old in any way .. look after yourself, while you look after your parents .. with thoughts – Hilary

    1. Thanks for the reference to the book, Hilary. I’ll look it up.

      I learned about being present for doctor’s appointments and meetings with my inlaws who never had very good answers to our questions about their health, their treatments, and what’s next after solo visits to the doctor. I’m partly to blame here because I’ve been accompanying my mom and dad to his appointments for the past year or so. But you’re right, I’m surprised at what I need to ask too, and apparently am not all that good at identifying it.

      Thanks for your thoughts and comments. Hope all is going well with your mother.

  2. Too many doctors have learned to depersonalize the relationship with patient and more importantly the family. I would suggest you explore health care providers that employ the holistic approach – mind, spirit, body. They could be an adjunct to your primary physician. The holistic approach has benefited cancer patients a great deal for example. Most doctors focus on the latter only. On the other hand, home care providers like yourself have more experience than the experts. The ancient Greeks were attentive to mental illness both physical and mental. Pythagoras(besides being a mathematician) was the first noted to postulate that thinking emanated from the brain and dysfunction therefore issued from some malfunction in the brain. His treatment protocols included healthy diet, long walks, stimulating conversation and hot baths. Pretty advanced I’d say.

    1. I’ve thought about the holistic approach, and think about it more and more frequently. For my dad, it is so difficult to get him anywhere now that we are probably going to limit his doctors to the visiting one as much as possible.

      That’s pretty wild about Pythagoras. My son is a math major and he says math explains everything. Too much for my little mind to comprehend.

  3. The problem is that sometimes we honestly do not know the right questions to ask, isn’t it? And then we find ourselves bumbling through trying to piece it all together. Sounds as if you guys might be on to some good help with the nurses and physical therapist, etc. Hang in there. Keep the faith. You are doing a great job even if you question it at times. Hugs.

  4. No question the medical profession has a ways to go…. and I think many doctors are well aware of it. As a mom of a son who just started medical school, I was so interested to hear at one of the “welcome” ceremonies a doctor-professor say that the current MDs are looking to these new students to help change the profession–including be more listening, being more patient oriented, treating the whole person not just the disease, basically looking at ways to move forward the medical profession. There’s a lot to be done — but also (as my son keeps telling me from the many books he’s read) doctors are just human with the same bad days, frailties, lapses in judgment, mistakes, etc., that we all have.

    I know this doesn’t help any of what you’re going through now — I just wish Dr. R had treated the man not the disease… as you say Halleluia for the physical therapy.

    1. Thanks for offering us the other side of the story, Julia. I think it is a very difficult time to be a doctor. I’m glad to hear there may be improvements coming our way in the future.

  5. Yes unfortunately it’s not until you learn to ask the correct questions you can get some answers.. leaving you to stumble on, and yet professionals are all interlinked so you would think it would be easy enough to pass on information so that you could get the correct treatments and advice etc.. But it seems in today’s world each are caught up within their own little worlds and unless you are a strong person who demands answers you don’t get very far.. And then when you do start asking questions you get labelled perhaps as being one of those annoying patients they would sooner not deal with..
    Pleased that you are seeing some more Light at the end of your tunnel Christine.. Many thoughts sent out for more positive days and outcomes.

    1. The team approach is good I think. And when we met with the VA’s visiting medical professionals, they sold their approach as an integrated team. I can see now why that would have been valuable.

      It appears we are getting there on our own with the visiting nurses having coordinated things for us.

      Nurse’s do the lion’s share of medical care, don’t they?

  6. Some clinics have gerontologists who specialize in providing treatment for the elderly. My mom has similar issues-dealing with a list of specialists who sometimes seem not to be talking to each other. She doesn’t have dementia, but had a stroke, so sees a cardiologist, an internist, and goes to the coumadin clinic monthly.
    It is eerie. I have a similar photo to my mom with her walker in the cemetery where she will be buried. We stopped there a month ago with my sister. It is in the small town where mom grew up, but she has not lived there for over 50 years. She sees it as coming home, I think.
    Best wishes on this difficult journey.

    1. I thought about looking into finding a gerontologist, but my mom is pretty overwhelmed with all the changes she’s had to absorb in her life already. She decided upon the visiting physician and I think we need to stick with him unless we find out it isn’t working.

      What’s really eerie is that this photo was also taken in the small town where my dad and mom both grew up. They haven’t lived there for more than 40 years. They had a bit of a disagreement about buying gravesites there. Dad wanted to; Mom didn’t. Then we had to revisit that argument when my sister Annie died two years ago and we had to travel the 45 minutes to the town’s cemetery during the funeral.

      Recently, since my dad can’t really travel there anymore, I am grateful their gravesites are there. I also see it as a chance for him to go home. This makes me cry.

  7. Christine–right now it’s very important for us Baby Boomers to be on top of our parents’ doctors’ appointments! I know it’s difficult, but it’s necessary. Since mine our in Florida, we have them FAX all the info to my nephew who is a doctor. When I was with my mother in June, I couldn’t believe how much they sent her from one place to the next–without results–until I demanded an answer. Then while visiting my father in the hospital, they made a big blunder which set him back two weeks. Geesh! My sister-in-law goes with my in-laws (93 & 90 respectively) to the doctor and keeps a huge file. It’s not easy.Take care–hugs.

    1. I agree. But sometimes I feel like I have to walk a fine line between being vigilant for them and butting in too much. I want to respect their independence. I think part of the problem is, in that generation you didn’t question the doctor. You really have to stay on top of it now.

      You’re lucky to have an MD in the family.

  8. We have experienced the same thing in other ways, it’s like we are already expected to know everything they know–and as you said–we don’t even know what questions to ask. I’m so glad your dad is getting the help he is right now. It helps so much to have someone come alongside and illuminate the path. Keep up the good work, Christine. And listen to Hilary and take care of yourself, too.

  9. Christine,

    I agree with Nancy and everyone. I am glad things are on a positive swing.

    There may not be a road course for the treatment of Alzheimer’s. There may only be a sign here or there that gives you some info. And no signs to turn left or right…and forget about the curves!

    CM, there is a book in this….you and others can make the way easier for yourselves and others in the future. (I know it is work but it would help alleviate your feelings of being at a loss)

    Possible questions/answers for the book/let::

    * When buying/renting a walker what is the most needed aspect? Brakes, etc?
    * When setting the height of the handles…what height is best? What body landmark proves the best?
    * ??

    Then when you get to the ‘medical’ type questions…give symptoms/signs and always refer to doctor/nurse/etc. (so the family checks with medical personnel, but already have questions at hand.)

    I could go on but I think you see what I am saying.

    In situations such as this , we are caught up in the emotional aspects, which is very normal, and I can say from experience, is draining.

    Breathe in ….breathe out….and focus only on the breath. We tend to ‘short’ breathe when in stressful situations. Take deep breathes on purpose. Oxygen helps clear the mind. And release tiredness.

    Focus on ‘bouncing’ into the right people = good energy…and forgive yourself for not ‘asking’ the right questions. You and your family are doing the best you can…and you are getting better.

    Namaste, Debra _/|\_

  10. I know that my parents will eventually need intensive care as they age, but most of the time I push those thoughts away. Then I read this post and the reality returns. What a source of insight you are to so many because you’ve had to go through these difficult experiences. I’ll be asking you lots of questions one day. But today I just don’t know what they will be.

  11. @Nancy, Debra, and JoDee
    Thanks for commenting. Good idea about the book, Debra. Maybe I should start keeping better notes.

    I’m doing this on my iPad and for some reason it won’t let me reply directly to comments. I’m going to be limping by this week I’m afraid. My computer battery has apparently blown up. I’m out of town so it may take a while before I’m back on my feet. The iPad is great, but limited.


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