New member(3)

GmaBo

Hi all,

I'm a new member to this group. My DP (dear partner?) has been diagnosed with MCI. This after a 3 hour visit to a well respected neuropsychologist. Learning, Executive Function and Working Memory were the areas indicated as weaknesses. He suggested we consider working with a speech pathologist. The neurologist our GP sent us to says we don't need to work with such a specialist right now. He wants to wait three months to do anything. This is so frustrating!

The following are behaviors I am concerned about and struggling with: (1) When he asks a question I usually have to respond about 3 times before he can comprehend and remember for even a few minutes. This frustrates him as well as me. We try to be patient.  (2) After living in the same house for over 30 years, he is having trouble remembering how to get here and there - in fact he got lost for over an hour right in our neighborhood. (3) he has had difficulty remembering the names of long time friends; also the relationships between family members. This is only occasionally so far. Sometimes his voice gets husky and very quiet. Then as he speaks, every few words get lost in a whisper.

I'll stop now before my rant gets away from me.

So far I've found several posts to be useful and look forward to connecting with others going through similar situations.

Barb

M1

Welcome Barb, this is a good place (though all of us wish we didn't need it).

Some of what you're describing sounds like more than MCI.  This comes up frequently---it seems the neurologists are reluctant to diagnose out and out dementia at first until the families get used to the idea.  If you're not familiar with them, look up Tam Cummings' stages of dementia, there are good descriptions of the seven-stage model (though it's not unusual for there to be some overlap).

Is he still driving?  Hope not.  This is one frequent battle, and you will find many threads discussing that here.  If he's getting lost, it's more than time to quit.  Loss of executive function is telling--also inability to remember any details.  If he was in an accident, he couldn't reliably remember to testify that it wasn't his fault.

The other frequent piece of advice to new members is to get your legal ducks in a row if they are not already.  Make sure you have durable AND healthcare power of attorney while he can still sign for those.  A certified elder law attorney (CELA) can help with these, will updates, and checking on need for Medicaid eligibility if it might be needed for long-term care.  Never too soon to get these taken care of.

My partner built our house 12 years ago, and can no longer remember which drawer the forks are in, etc.  It's very sad.  Repetitive conversations are the norm, and yes, the family members are very mixed up.  She's stage 5 now.  She's known my two adult children from a previous marriage since they were 2 and 4, respectively, and she asked the other day if she could meet them.  Breaks your heart.

Wishing you well.

Iris L.

GmaBo wrote:

. He suggested we consider working with a speech pathologist. The neurologist our GP sent us to says we don't need to work with such a specialist right now. He wants to wait three months to do anything. This is so frustrating!

Welcome GmaBo.  Cognitive rehabilitation does fall under the domain of speech therapy.  But I think they are more suited for stroke and brain trauma patients.  I spent three months doing cognitive rehab for my dx of "cognitive impairment not otherwise specified", but I learned nothing.  In addition to reviewing the stages, I suggest you review "instrumental activities of daily living."  These are things she could do independently or with assistance or not at all.  This will help you focus your assistance.

Most GPS are limited.  I suggest you consult a neurologist to consider a prescription for Exelon patch which has helped me.  I had significant difficulties with speech up until 2009.  My neurologist gave me a trial of Exelon patch and within a few days I noticed a difference in my speech.  I have been on Exelon patch ever since.  I do not have Alzheimer's disease nor Parkinson's disease.  No one can predict whether Exelon will help or not, you just have to try.  Many members are against the dementia medications, since for many PWDs, they have little to no effect.  I believe this is because the dementia meds are started too late.  They do not cure, but may enable better functioning in some PWDs.

A quiet voice can be a sign of Parkinson's Disease.  PD has a myriad of non-mobility signs and symptoms.  A GP cannot diagnose, consult with an experienced neurologist who specializes in movement disorders.    

Iris L

Quilting brings calm

Resources/ the book the 36 hour day. Excellent reference guide to symptoms, behavior, etc 

Google understanding the dementia experience / it’s a 12?  page free pdf.

Dementia care central is a great internet site.  I use the stages I do in there to gauge where my mom is in this wretched disease.  You have to have  some sort of a guideline to manage your money 

. 

Bhopper

So sorry your her but welcome!

Teepa-Snow has allowed me to survive this awful progression my DW started very similar it sounds like that was 6 years ago. Please get a POA medical and durable and elder care attorney. I might also suggest a psychiatrist that will listen to your LO but more importantly you! Best Wishes and feel free to reach out some really good folks here!

sunshine5

Welcome to the group Barb. DH going thru similar. Waiting on Neuropsyhology tests results. Do read my today’s note on coconut and mct oil.

Good luck!

Cobalt

Replying because I want to bring up that YES, SLP therapists DO work with patients who have Alzheimer's/Dementia.  It may not be a long term therapy situation, but often it is done first to evaluate, second to suggest memory-building and brain exercises and also to plan for changes that will help communication.

You have to have a SLP therapist that is certified to do cognitive therapy.  Most SLP therapists work with people who have swallowing or breathing problems.  Also with speech problems. A neurologist has to make the referral to cognitive therapy.

Ours is in addition a Neuro SLP, meaning she works mostly with people who have specific neurological conditions.  For my son, that would be seizure disorder and severe ADD.  You will find such therapists only in very large metro areas.  In our state Arizona there are only two therapy clinics that have Neuro SLP.

There are other situations that come up in getting SLP and having insurance pay for it.  In our state insurance will pay for "maintaining skills" so this applies to working with someone who has a deteriorating condition. The catch is that the therapist must be able to set goals and specific cognitive tasks to "measure".  Some are timed so hopefully the monthly evaluations on these tasks happens on a "good day".  As long as my son maintains cognitive skills or improves even slightly, we get to continue this therapy

Another tidbit:  once your LO enters Palliative Care in the home, or hospice, therapy stops.  The theory is that insurance will no longer pay for therapy since there is no progress expected.

We have totally loved our 2 therapists over the last year and a half.  Thankfully, they prepared me more for what to look for and how to provide more support on his thinking skills and socialization and conversation.  We had adult memory workbooks, simple card games and fun little conversation starters.  Worth a lot.  But then, I and the caregivers here all are invested and work with him and the "home exercises".  It would not work unless there was someone in the home who attended sessions and then did the follow up.

To GmaBo, to me it sounds like you and your husband would really benefit by cognitive SLP therapy.  Our therapist also worked with his breathing to increase his voice volume and it helps.

towhee

Welcome to the forum. It does sound as if he is further along than MCI. One thing that differentiates MCI from dementia is that dementia gets worse over time. This might be what your neurologist is waiting to find out, so that he will be able to prescribe the correct treatment and medications. For the comprehension- Use the shortest answer, the fewest words possible. Speak a little more slowly, and pause before repeating yourself. He might not be able to process words as fast, and needs more time.

GmaBo

Thank you to the many replies to my initial post. I appreciate the information and welcoming messages. It's good to feel heard. I am looking at information sites suggested. I also appreciate the thoughts as to how to cope, what to perhaps expect and general experience based comments.

I will definitely speak with our neurologist about cognitive therapy. The explanations about why the doc may be hesitating is helpful too.

Just one great big THANKS to you all.

See you on the board.

Gratefully,

Barb

piozam13

Barb,

I noticed the symptoms several years back, but I couldn't get DH to see a doctor..  Finally, when DH was diagnosed with MCI by a neurologist/psychiatrist, her words to me were.  'He's not so bad, but you need tons of patience.'  DH was prescribed medication, but I was  told it's not to cure - but only to delay the progress of the disease.  It was hard to take and every day was a challenge.  Later, at some point I realized that there was nothing I could do about the disease,  so I had to change my attitude.  Do not hesitate to ask or rant - we're here for you.

Gig Harbor

Hi Barb,

There is nothing you can stop this disease. Meds may help them function a little better as the disease progresses but they do not actually slow the disease. I agree with others that he seems farther along than MCI. My husband has a lot of the same problems your husband does. This summer has been a summer of losses. He now gets lost in our neighborhood, doesn’t know I am his wife, can’t remember something he did 30 minutes ago and will walk out of the house to go for a walk without telling me. I am going to buy and install a Ring system this week so I will know when he tries to leave. He doesn’t know where to throw dirty clothes, now forgetting to brush his teeth, forgetting to take meds when they are set out in front of him, can’t remember where light switches are and can’t remember how to make a sandwich. These losses occurred just this week. Our main problem is that he still wants to walk a lot. If we go for a 4 mile walk before lunch he will want to take another one in the afternoon. It was great when he didn’t get lost but now I have to go with him and I refuse to walk 8 miles a day because I have so much to do around the house. He is resistant to having someone come in to walk with him so I will have to be creative as well as find a caregiver who wants to walk that much. My only goal is to stay sane and hopefully have a life in the future. Good luck.