Wife Has Mild Cognitive Impairment

DJnAZ

I posted this yesterday on the caregivers forum when it would have been more appropriate here. 

My wife Linda (63) was diagnosed this March with Mild Cognitive Impairment. Her condition really began, in my opinion, in late 2019 and was significantly impacted by the Covid pandemic. Although she never had covid, the stress surrounding a global pandemic seriously affected her in ways I cannot understand. As if this wasn't enough stress, our 17-year old dog died in November. After that she took a significant downturn and is definitely not improving. Both her mother and maternal grandmother died of AD so her future is, unfortunately, bleak.

She had an MRI and CT scan prior to the MCI diagnosis that one doctor said indicated the possibility of frontotemporal dementia. The doctor put her on memantine but said there really wasn't much that could be done and memantine would only slow the progression at best. Now, however, she won't take it anyway blaming one side effect after another as the reason.

While she manages to deal with personal matters reasonably well, her memory and language skills can be limited. I think she knows the words she wants say but very often they just don't come out. Or if she does get a sentence formed there are missing words or words that just don't make sense. In addition, her short term memory is almost nonexistent. Long term memory is still pretty good.

One last thing. We live in a small area in Arizona without an abundance of medical specialists. In fact, the one neurological MD recently resigned his practice. We are left with a neurology NP that we have seen one time but do not intend to see again. After 25 minutes in the exam room she gave me a stack of Alzheimer's Association pamphlets and basically said "good luck". 

So...this is basically our story. To say I am frustrated is an understatement. Exhausted too. I look forward to comments, thoughts and input from others that share our situation.

amicrazytoo

So sorry you have to be here with the rest of us, it's not a pretty place to be. That said, you won't find a better place to gather information for yourself and your DW. It's an awful shame that more is not done to assist the caregivers. My best advice to you is to see a Certified Elder Law Attorney, ASAP.  Make sure you have all your legal paperwork in place, while she still has some reasoning. Next step, read as much as you can here and ask questions, surely one of us have already been there and can offer suggestions. Even is you need to vent, we all understand, as you will see us vent now and again.

Wishing you the best.

Rick4407

Hello DJ,  Sorry to say treatment for alzheimers is pretty nonexistent.  There are a couple of drugs, as you mentioned that may slow progression.  My DW tried Aricept for a while, no recognizable help.  As the disease progresses your best friend is a geriatric psychiatrist, or a NP with experience who will prescribe drugs for symptoms.   Treating the symptoms is the best medical science can do.  My DW takes Seroquel for delusions.  

As mentioned above seeing a certified elder attorney to help you prepare for the future is good advice.  Many with Alz or one of the other brain diseases end up in memory centers, those are fairly expensive.   

Lots to read here, people with the severe problems tend to post the most.  There are probably many like my wife that require lots of attention but are comparatively happy, fairly easily to control, and operate at the level of a 2-3 year old child.   The disease only goes one way.  The end result is the same for all, it is just a matter of how fast the disease progresses.  Welcome to where no one wants to be.   Sorry to sound so negative, Rick           

Southernmemere

So sorry to read your post, the first part of it could have been written by me.  I too believe the pandemic took its toll on my DH, he was starting the year before to slip but the year we were shut ins really put his memory issues on a fast track.  He gave up his car, on his own, which was a Godsend because his driving was terrible so I’m thankful that’s behind us. His hygiene has become an issue because he forgets he hasn’t showered & argues that he has, I feel like his mother, sadly & he doesn’t like it. He was diagnosed with Mild Cognitive Dementia but we’re seeing a Neurological Memory Specialist tomorrow & after being on this site, I now know there are so many different types, I am hoping he can elaborate & give us a more specific diagnosis. I am fortunate to live in a large city & have joined a Caregivers Support Group at a Church, I need to vent & hear what others do in similar situations. This forum is great for doing the same. I cry a lot….for him & yeah, for me.  We loved to travel, cruise & socialize but I see our walls closing in. His loss is also my loss & it’s HARD to believe it’s come to this.

HSW

Hi DJ, my DH started off with a low dose of Aricept which increased after a couple of weeks. The body needs time to adjust. I gave him his morning pills with breakfast. Memantine was added about 6 months later.  Citalopram was added due to his violent paranoid behavior. Quetiapine was added at night because he would do stuff like searching the house or trying to fire me. His behavior was ok for about a year until the stress of his Mom dying. At that time, the doctor and I had the placement talk. Him wanting placement  and me not ready to give up on keeping him home. Quetiapine was added in the morning and knock on wood he has been fine since.

During the MCI stage he did have what he called light headedness, headaches, his usual constipation, pain in his shoulder and in his side. I took over his medicine, appointments, logging his symptoms, diagnoses and behavior. I provided an update to every doctor before the appointment. 

 I sort of tricked him into not driving. He had destroyed his own car with an axe hence the shoulder pain. My car hit the 200k mark, was falling apart and stunk to high heaven because he thought every day was a dump day. I bought a Subaru Baja  and never let him drive. My son and his friends took the old car to a lot in the woods and had fun finishing it off before getting a flatbed to bring it to the junkyard. I hid the keys for a long time to avoid temptation.

aod326

Hi DJ, welcome. You and your wife have been dealt a crummy hand. I expect you're drinking from a firehose, with finding out options and making all the decisions.

One small thing I'd suggest is reconsidering your stance on the neurology NP. Sadly you'll find that the vast majority of us were given very little, or zero, guidance from doctors as to what to expect or how to handle the situation. This forum is far and away the best way to learn things. One benefit of the neuro NP is that she has more experience with prescribing neuro meds - and you definitely need someone in your pocket who can do that. 

The most helpful medical role would probably be a geriatric psychiatrist, as they have the most experience with dementia. However, as your wife is 63, you may find trouble getting anyone to accept her. My DH was 60 and almost all geripsychs refused to see him; by the time I finally found one who would accept him, I had placed DH in MC.

By the time I found this forum I had been experiencing dementia behaviors from DH for a few months. Just coming on here regularly, reading, and adopting several of the tips I'd read reduced my stress significantly.

Good luck.

DJnAZ

Thanks to all who have replied. It is hard to express the relief I already feel having found this forum. While it is sad beyond belief to read the stories of others in a similar boat, in this case there definitely is some solace in numbers. So, again, thanks for your thoughtful replies, insight and shared experiences. 

Although I've been in this a relatively short time, I  have started some legal changes with a PoA as well as medical authorizations so I may deal directly with her insurance and doctors. I have not contacted my attorney until I feel he needs to be brought in to save on his fees.

As many have expressed, this forum is a wealth of information that I am just beginning to wade into. These shared experiences are considerably more valuable to me than listening to a obviously distracted neurological NP suggest there is very little that can be done as she scheduled our next billable appointment. When I asked about meds she stated categorically memantine was the only drug for MCI and it's effectiveness in delaying the inevitable was questionable. 

I realize medical professionals are important, but living where we do there simply aren't any geriatric psychiatrists or even MD's that specialize in dementia and cognitive diseases. To that point, I am considering relocating to a metro area with better access to specialists.

I am so sad for my wife, myself and everyone that shares this terrible experience. We had planned these years for travel and adventure. We lived in South America for 3 years ten years ago and had planned to move to Spain this year. Now I've lost my best friend and our best dog in less than a year. Sorry to end on a downer, but this is not a happy time.

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Ed1937

DJ, sorry you are dealing with this too. But welcome to the forum. We have a great bunch of people here, willing to help, and share their experiences.

You will find that people with dementia can be very different from each other, but very much the same in many ways. Caregivers fit this pattern too. For instance, my wife did not want medications for her memory, and I support that. Most others take memory meds, but most can't say for sure they help, and all medications can have unwanted effects. And some dementia patients may have symptoms that another will not experience. Aggression comes to mind, as well as others.

Please remember to take care of yourself, because if you don't, your caregiving skills will suffer, and your dear wife will not be cared for as best as she could.

I'm giving you a link to a good source for understanding what is going on with your wife. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  Keep posting to get  the full benefit of the forum.

Once again, Victoria and amicrazytoo have some excellent advice about a CELA. 

DJnAZ

Thanks Ed1937 for the link. A lot of very good information that will definitely help as I continue down the caregiver road. It may not change anything but explained some ting that so far have not been addressed by the medical professionals we've seen. 

Yesterday I began to received one SPAM phone call after. As I would block one another would ring. They all stayed on just long enough to go to voice mail for a few seconds. My wife and I both have mobile numbers and I also heard her phone ringing a lot. On closer examination the calls on both phones were from the same numbers. 

She has been spending a lot of time on her phone recently and now I know why. She was entering sweepstakes, responding to credit card offers as well as loan and insurance scams. I say scam because I've never heard of any of the companies. I discovered she has been getting 75-100 email messages per day from similar organizations. 

Fortunately I have taken away her credit cards and transferred cash from her Pay Pal account to our local bank. I hope she has not given out any confidential info but time will tell. While this is not unexpected, I was surprised. While we certainly can use money, we are not in dire straits just yet. So why she is doing this is beyond me. I have begun to unsubscribe to hundreds of email offers to her and went through her phone and blocked everything up to this point. I'm sure there will be more.

This is all too familiar. Her mother sent over $100,000 to scammers during her early years of AD. I'm learning a lot and getting an education I never wanted. 

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M1

DnJAz, I concur completely with blocking internet access and getting rid of smartphone.  You have to assess whether she will resist, does she still use email for any friends and family?  My partner lost that ability pretty early and most do eventually. I came home one time to find her on the phone with a "Microsoft" scammer and she had given him remote access to her hard drive. That was a huge mess. We still have to watch mail solicitations, etc. too fwiw.

ladas

Hello DJnAZ. One thought I had was for you to try to find a geriatric psychiatrist who is willing/able to have online Zoom appointments with you and your DW. Since COVID, I have had many doc appointments on Zoom. Since your DW most likely wouldn’t need a physical exam, I don’t see why a Zoom appointment wouldn’t work. It would sure be a simpler option then moving to a metro area. Best wishes.

BadMoonRising

DJ,

The NP is correct. I was diagnosed with Mild Cognitive Impairment several years ago. A neurologist prescribed Aricept, Memantine and eventually the Rivastigmine patch. I experienced nausea from the first two meds and hives from the third. Since then, I have consulted with an Alzheimer's Disease expert. The expert was adamant that the studies did not support prescribing these drugs for someone with MCI, especially for someone experiencing those side effects. 

The expert's opinion is backed by the studies. Sometimes we are so desperate that we'll try anything. In my case, the expert was clear that the side effects outweighed any potential benefit that could come from these meds.

I recently learned that this expert served on the FDA Advisory Committee that voted against approving the new Alzheimer's drug. My thinking is that he undoubtedly has a better understanding of the efficacy of these drugs than most health practitioners.

It's a difficult decision, for sure.

BMR

bt wilson

I would suggest nomorobo.com, part of their process is to create a "white list", which is a list of 'approved' persons (numbers) allowed to be passed through.  All others not on the 'white list' are blocked, and will not be a bother again. How to limit outgoing calls, that is a different thing.  You can program your phone to not allow any 800,899,and other 800 type numbers.  A Google search, with some caution, can give you other possible solutions. Possibly ask at the store where you bought the phone, just don't expect much.

 ...Luck

Crushed

You are getting good advice but let me stress the need for medicaid planning with an elder care lawyer.   My wife was MCI in 2010 at 58 years old.  Her care currently in a first class facility near Washington DC costs $150,000 a year. The lowest cost in the state of Md is about 90,000 a year.  I tell people that this disease makes you instantly poorer than you ever thought you would be. 

Note such lawyers do not have to be in your community.  the are very used to dealing via face time and zoom