Newbie Question

jbrucej

Let me start with my question and the goal of this post, and follow up with probably more info than anyone wants; but catharsis for me.

Questions:  My wife has dementia - probably related to her blood cancer; but perhaps not.  Are there tests to determine what is the cause? And if there are, are there treatments that make things better?

Her symptoms:

• The first symptom was her driving.  She lost all ability to multi-task and so she'd drive and when she came to an intersection, she would run red lights because she was looking for cross traffic.  Same with stop signs. Finally, she became terrified of driving because she really forgot how.  I don't let her drive now at all.
• Multi-tasking is still an issue.  She'll start to comment on something she thought about and get a few words in and totally forget what she was talking about.  She'll get up to get coffee and I'll go into the kitchen and her cup is sitting on the counter.  I usually just fill it for her.
• She will start to tell a story and get part way through and get totally lost.  I find that it helps her stay grounded by repeating stories so I let her go.
• She knows she has a problem with communication and so she/we have reduced or community - fortunately COVID has made that easier.

She had her "welcome to Medicare" appointment in September and the doctor noted the issues.  She has an incurable blood cancer and he consulted with her oncologist and both thought the issues might be related to the cancer depositing in her brain.  However, she had a brain MRI and it was mostly normal for a person her age.  So now, no follow up suggestions.  In other words, since they don't think the symptoms are caused by the cancer, they had ZERO suggestions for follow up.

 We understand that her cancer means she has few laps left - but, I'd like to make them as great for her as I can.  So, if there's something she/we/I can do to improve things, we'd like to know.  But don't know where to start.  Suggestions? 

Thanks for any tips.

Paul&Me

The first appointment we had, when Paul was showing symptoms and we wanted answers, was to a neuro-psychologist for testing. Has her doctor done the mini test with her, where she will be asked to draw a clock, write a sentence, remember 3 words? I don't remember the name of the test but someone here will know. The neuro-psych testing is a lot more involved, and you wouldn't be able to be there with her, but it is designed to determine whether it's just aging or something much more.

By the way, I have an incurable but treatable blood cancer as well, Multiple Myeloma. I have noticed a bit of memory decline, but I had a fantastic memory before treatment. They say "chemo brain" for the forgetfulness when recovering from chemo treatment, and I was surprised to learn it's not all temporary, you can expect some long-term memory decline with chemo. It's the same with anesthesia, and the younger a person is, the easier it is for the brain to recover abilities. An older person will have longer effects.

I've had two stem cell transplants, both began with one very high dose of chemo. It was explained to me as being 10 times the amount given for breast cancer. I have not had the driving issues your wife had, but I do walk into a room and forget why.

jbrucej

Thank you for the quick reply.  Yes, she flunked the mini-test.  Her cancer is a very close cousin to Multiple Myeloma - it's called Waldenstrom Macroglobulinemia and it's often confused with MM.  Her cancer had progressed too far when they found it for her to get a transplant.  I pity you getting the transplants - they are extremely rough and I hope they "took".  

I guess what I'm looking for is whether it's worth the trouble to pursue diagnosis and treatment for her cognitive issues --- so that her quality of life is improved; or to just deal with it.  Given her cancer, at this point we both rather feel like just staying the course.  But, it's very hard as caregiver to see someone you have loved for 50 years slip away.

Thanks again

JM1316

My DH has Alz., progressive brain disease.  Correct me if I am wrong but the only treatment for cognitive impairment is memory meds.  They only slow it down, not cure it.  

I am only 1-1/2 years dealing with DH Alz.  I am sure you will get more advice from the wonderful people on this message board.  

Dottie

M1

Hi Bruce, so sorry for your situation.  Waldenstrom's is a tough one, the proteins produced are large and can cause circulatory clogging, I think, and maybe that's what they think is affecting her cognition--but it wouldn't show up on any kind of imaging test.  The "memory meds" that you hear about for Alzheimer's have modest effects in the best of circumstances and are unlikely to be effective for your wife, sadly.  They probably aren't making suggestions because they just simply don't have any.

Everyone here understands your pain, though.  It is agonizing to have this happen to our loved ones, regardless of the cause.  Hopefully there may be other information here on these forums that will help you navigate these tough waters.  Good luck.

Iris L.

Welcome jbruce.  I suggest you keep your DW's environment simple and consistent.  Become pro-active in anticipating her needs.  Learn from the other members.  

Iris L.

Paul&Me

We pursued the diagnosis for Paul in order to qualify for SS disability. He was about 50 when he started showing symptoms, and 56 when he could no longer work. I realize that doesn't apply in your wife's situation. The best quality of life is a loving caregiver who goes with the flow and keeps the stress to a minimum. Paul has been on the memory medications, but he is still progressing despite that.

I'd not heard of your wife's cancer, so sorry. I'm relatively young, so I was able to survive the transplants without too much trouble. It takes about a year to fully recover from it. I hope there is a treatment for your wife that she can handle. This is a time that you need to weigh quality of life against possible benefits of treatment for the cancer.