Connect
What am I missing?
I've monitored this group for about a year. Don't feel qualified to comment on much. However, recently decided to see if anyone else has experience similar to what my wife have experienced.
My wife of some 40 years has an undiagnosed cognitive impairment. Aphasia, inability to process words during conversations, loss of short termed memory, and bouts of confusion. We worked with one neurologist for about 8 years. No diagnosis and the only treatments have been memantine and donepezil. We seemed to be in what I began to call the “revolving door.” Eighty-mile drive to doctor every 6 months, half hour wait, 5 minutes with doctor, eighty-mile drive home. All this accomplished was sustaining the prescriptions. The meds did seem to keep her calm.
We finally got a referral to another neurologist, who spent a lot of time interviewing us and then spent more time reviewing her records. He, too, concluded that the available information didn’t support any specific diagnosis. He seemed to be up on the most recent research and potential treatments and told us to stay with the two pills. He released us to our primary physician, so that we no longer have to make the long trips to just maintain prescriptions.
So far, we are coping within our home. I’m the main caregiver, although we live in a wonderful, small community that provides a lot of support. I doubt that we’d find a better place.
My wife seems to be slowly getting worse—perhaps more in terms of confusion and memory loss. Hard to tell. I’m probably too close to the situation to detect subtle changes. She has good days and bad days. On the whole, I’m doing OK, but the stress level does go up and down.
I’m 86 and have some heart deterioration; she’s 82 and physically very fit. Really active. Simple odds say someone else will eventually have to take over her care. I’m working closely with her children trying to plan for that time as best we can. No conflicts there, except they say I tend to sugar coat the problem and don’t ask the hard questions. That’s OK, because they’re tougher than I am, so they can ask the hard questions.
I guess my main concern lies in going so long without a real diagnosis. Is there something more that could be done? What am I missing?
Like
Helpful
HugInterested in more discussions like this? Go to the Caregivers: Dementia Support Group.
Connect
Something I left out of my initial narrative regards communication problems. What I've called "aphasia" is her inability to come up with the proper words to communicate her thoughts. And she obviously still has some very valid thoughts buried in her mind. She especially struggles on proper nouns--people and places. Many times the words come out as gibberish, and she seems unaware that she's not communicating. In addition, she had difficulty processing other people's speech. We've gone the audiolotist route and spent megabucks on hearing aids. Didn't really help, and she eventually fought wearing the devices. What is frustrating is that it is often obvious that she's trying to commnicate real information and real ideas. She gets angry at me, because I can't always interpret what she's trying to say (actually I do pretty good), and, especially, that I don't speak clearly. The latter might be true, but other people seem to understand me. She gets especially frustrated in groups, because she can't keep up with the conversation. We worked remotely with a speech therapist, but that obviously wasn't helping. There are no speech therapists within reasonable travel distance, and I'm not sure they deal with the real problem, which seems to be neurological short circuits.
-
Like -
Helpful -
Hug
1 Reaction@harleyshaw, there are several aspects to your wife's challenges with communication. I'm tagging a few people who may have thoughts from different perspectives.
@julieo4 lives with hearing loss and is familiar with people's resistence to hearing aids even without the complication of aphasia or cognitive impairment. Sometimes hearing loss can be the sole contributor to cognitive challenges. Other times it may be a contributor, but not the root cause.
@hopeful33250, often takes part in aphasia related discussions. You can see a list of those discussions here:
https://connect.mayoclinic.org/search/discussions/?search=aphasia
In particular, I think you'll see familiar situations reflected in this discussion as well as helpful tips and support:
- What strategies help you cope with behavioral changes in loved one https://connect.mayoclinic.org/discussion/cognitive-impairment/
It must be a challenge to not react when she gets angry when she feels you're not interpreting or understanding her correctly. I bet you are doing your best and have a high batting average for getting it right. Are you able to blame the disease and not get angry back? Hard to do all the time. Some of the time counts too. 🙂
-
Like -
Helpful -
Hug
1 Reaction@harleyshaw,
I so appreciate you sharing the journey that you and your wife are on with communication problems. You are in a difficult situation since there does not seem to be a diagnosis that will neatly fit your wife's problems. I'm sure you are being far more effective than you realize and I'm sure that if your wife could communicate with you, she would also be appreciative of your efforts.
Have any of the doctors and/or speech therapists recommended reading aloud? This is a technique I used after my surgery for a paralyzed vocal cord. It does make a difference. It can also stimulate cognitive processing.
Here is a link to some articles on the benefits of adults reading outload. You can see that it does help with memory in different ways.
https://www.google.com/search?sca_esv=592660282&sxsrf=AM9HkKlgTjaFt5i9qRV0o_xBUwKOzJOFTQ:1703115552647&q=Reading+aloud+benefits+for+adults&sa=X&ved=2ahUKEwizvpfsl5-DAxVSkyYFHWGCCrgQ1QJ6BAg_EAE&biw=1366&bih=599&dpr=1
If your wife was a reader, or had an interest in certain topics that might be a good place to start. Perhaps you can begin reading to her and then see if she would like to read after you stop. It could be just a sentence at a time to start and just see how it goes.
Singing can also be a way to bypass, so to speak, communication and cognitive difficulties. Prior to the pandemic, I was involved in a therapy choir. This choir was mainly composed of adults who had closed head injuries. However, there were some autistic individuals as well. I recall one autistic young man who would never say a word, but he could get up in front of an audience and sing one of his favorite songs from a Disney movie. We were all impressed with the ability of music to transcend communication barriers.
These are just some ideas that you might try and see if your wife is able to respond and/or at least, enjoy them. I would enjoy hearing from you again. You don't need to go through this alone, Connect is here to "listen" to your thoughts and feelings as you travel this road.
Will you post again?
Thanks much for your comments and suggestions. I have tried reading to her and asking her to read. She resists both and finds them irritating. She does still read on her own, although this may amount to reading a single page or article multiple times over a few days. I can't tell how much she really absorbs. Before dimentia set him, she was a voracious reader. Also ran her own publishing business. She seems to be trying to hold on to literature as best she can.
-
Like -
Helpful -
Hug
1 ReactionThank you for these recommendations. I will follow up. And yes, trying to not get angry is one big challenge. I really dislike having to repeat myself multiple times, only to realize that she still hasn't understood what I'm trying to say. And she can be very demanding, getting angry especialy when I finally give up on a communication. Sometimes I suspect that holding on to the attention is more important than understanding the subject.
-
Like -
Helpful -
Hug
1 ReactionI took my step-mother to a neurologist did sonic testing and asked her some childlike questions, no determination, come back in 6 months. We did, well her brain is shrinking, ok so now what? Come back in 6 months.
Obviously, it was a complete waste of time, we knew she had a problem, we identified the start of it some ten years before. Finally in 2019 we moved her and her husband into AL, he died in 2020.
She stayed in AL for another year, then we had to move her to MC as she was roaming and dumpster diving, climbing on the ladder of a commercial dumpster and jumping in.
To me, it doesn't make any difference what type she has as there is no cure for any of them, no meds to cure the disease. Her physical health is good, her brain is broken.
We observe her, we see the decline, she used to color and draw in the last 2 months she has stopped, she now doesn't want to shower or change her clothes.
She is where she needs to be in lockdown, she is self-pay and is in a very nice facility. Under the circumstances she has a good quality of life.