Where do I fit in?

doublejay4me

Since we dont have a diagnosis yet, I feel like I'm in a unique situation from everyone else here. My husband is having some memory issues (nothing terrible yet, just some forgetfulness), and his mri shows brain atrophy. He is 51 and one doctor compared it to the brain of a 70 year old man, which sounds terrible! My husband grew up in a poverty level home and feels that maybe his brain never fully developed and this is why the atrophy looks so bad for his age--that it's not actually atrophy but rather a small than normal brain. Is that even a possibility?? Right now, his neurologist is focusing on his very poor sleep quality that has been going on for many years as the possible cause of all of this. I want to believe that is all it is, but it's just so hard to know what's what. I've read that poor sleep can actually be a very early symptom of Alzheimers. I feel very alone because my husband doesn't seem too worried, and I can't tell if his Dr is just trying to keep us in the dark to spare our emotions or if he really feels like it's truly just sleep related. Without an actual diagnosis, I feel foolish for being so upset and worried, but I also feel like I want to be prepared for the worst in case it comes true. Did anyone else feel like they were just left hanging out in no man's land indefinitely until the diagnosis became more apparent? I feel like I need a support group for those who know something is happening to their spouse, but they don't quite know just how bad it will get. Thanks for listening.

jfkoc

Welcome...

Sadly a diagnosis is very difficult and may change over time. Regardless os a diagnosi you are going to need to learn how best to live with what ever problems there are.

All you can do is to make certain that a diagnosis is made following correct protocol. You can find info on this online.

I suggest you take this time to meet with a certified elder care attorney to draw up needed documents for your husband and have them done at the same time for you.

I also suggest you read everything on alz.com and that you stop trying to discuss things with your husband for now.

You are not alone...we are here for you...we do understand!

Lgb35

My DH only recently received a MCI diagnosis. We floundered for a couple years trying to determine what was happening. He also has poor sleep for many years. Something I learned when my Dad had cancer is, you have to be your own advocate. Do your research and don’t shy away from asking for tests. We have had an MRI showing atrophy, neuropsychological testing showing deficiencies, spinal tap showing borderline for Alzheimer’s, so much bloodwork. You only mention the MRI so not sure if that is all they have done so far. When we started this journey I didn’t really notice much but my DH complained about his memory. Now there is no question. He also tries to rationalize what is going on and downplays the impact on his life to the doctors which is not helpful.

hang in there!

doublejay4me

Thank you. He's had an extensive memory test done. He did average on it except for a couple of language areas but the administrator of the test felt that his poverty background could explain that (lack of being read to as a child which would limit his exposure to a wide variety of vocabulary, etc). He's also had tons of blood work done. Most was normal, but we've discovered he is pre-diabetic (He's working on his diet and exercise to improve that), and his Thyroid numbers are a little off but just mildly so.

Ed1937

Doublejay, welcome to the forum. Sorry you need it, though. You don't need a diagnosis to fit in here. I'm sorry it's so hard to get a diagnosis, but for young people that seems to be the norm.

Make sure that every test was run to see if there is something that is treatable, and could reverse the symptoms. We do have others who are dealing with younger onset, and they can be a good source of help for you, as can the rest of us who have dealt or are dealing with this now.

Ask questions for your doctor, and ask here for help and suggestions. I'm sorry you are dealing with this now. The suggestion about seeing a CELA is something you don't want to let go. It needs to be done soon.

Iris L.

Ditto what Ed said, treat everything that is treatable. Investigate sleep apnea. Nevertheless, he may still turn out to have Alzheimer's Disease, which is a rule out diagnosis after all other possible causes have been eliminated.

Familiarize yourself with anosognosia, this is why he seems to be not too worried.

Is he still working? This is important. Try to (discretely) get a copy of his latest annual employee review to see if he has had verbal or written warnings of poor performance or abnormal behavior on the job. If he were to get fired he could lose all employee benefits. Don't say anything to the job about MCI at this time.

Iris

doublejay4me

Thank you, Iris. No sleep apnea. His sleep study was fine. He is still working and not having any problems at all there. His most recent review was just a few months ago and he always gets highly praised. I think we are just very early on in this process where his symptoms are just beginning and barely noticeable. All of this info is so helpful to have for down the road, though, if we ever get to that place. I appreciate the feedback.

M1

Welcome to the forum. In your situation, it would be useful for you to document what you are seeing over time. Family nearly always picks up on the subtle changes first, and there are occasionally threads/discussions here about what people noticed first. My partner was a custom contractor, and--only in retrospect--one of her closest colleagues recognized that she had trouble with things when she built her last house (the one we live in on our farm) in 2007-2008. I started noticing problems in 2014, when she couldn't figure out how to work an unfamiliar shower in a hotel, and when she had trouble opening a bank account for her nephew to use that same year. She also started having spatial difficulties with things like backing up her pickup truck and the tractor.

Iris L.

If it is very early, I would suggest working on Best Practices, which are lifestyle habits. I have read that 50% of dementia has a demonstrable cause. Be aware that many will dispute this and tell you that there is nothing you can do to stop or to slow it down.

Nevertheless, I chose to follow Best Practices and I am satisfied that the decline of my memory and cognition was slowed. I do not have Alzheimer's Disease. Many people may have memory loss from some unknown cause. I work to alleviate many factors.

It's true, poor sleep can cause memory loss. I don't know if it causes brain atrophy.

I don't think poverty causes brain atrophy. Poverty can cause poor brain development in children. But if he has grown up and had a lifelong career, I doubt he had significant poor brain development. Brain atrophy is a significant sign.

Also, if you and he have a bucket list, do it now, while you still can.

Iris

Karen-luvsumer

I feel your pain as well as your sense of confusion. I’m further down this path. My DH is now 73. I’m sure he had a mental breakdown when he was 50. His personality changed, speech became unintelligible, he cried, whined, either slept around the clock or didn’t sleep at all. He was diagnosed as bipolar and numerous medications were tried with marginal success. He lost his job which was most likely due to these difficulties and never returned to full time work again. I’m younger so was still working full time as a teacher. This episode lasted a year. I was fortunate and able to seek out psychological therapy for myself which taught me skills I’ve relied on for the last 20+ years. About a year ago he was diagnosed with Alzheimer’s. The diagnosis was not a surprise to me but came too late. I had been complaining to his doctor for 2 years due to memory concerns and was ignored. My concerns were only acknowledged after I complained to my doctor, who works at the same clinic about the situation. She wrote a letter to DH’s doctor in front of me with specific examples and things finally got moving. I realize the pandemic as well as my responsibilities in dealing with my DM’s dementia, death and then the estate all played a part in the delay of a diagnosis for DH but I can’t help but feel we would have more things in order if the medical community had been more helpful.

This can be a very long road. Have a strong faith. Develop your own as well as his outside support system. This might be family, friends, church, and clubs. Get a will or trust. Learn as much as you can about the situation. Be secure with your partnership with your DH, your leadership in the marriage and life, and your caregiving as possible because it’s likely these shared responsibilities will become yours. Accept assistance when it’s given. Pay for services like lawn care or housecleaning if able in order to spend quality time with DH, as well as keeping connections to others. Take care of yourself. Develop a bucket list and then do it. It is important to take care of yourself because there will be many times you’ll be overwhelmed.

Karen-luvsumer

https://alzconnected.org/discussion/comment/177399#Comment_177399

ElaineD

Hi Double: you fit right in, don't worry.. We're all alike in different ways, if that makes sense. Keep posting, reading, sharing, and caring for your DH. Have faith that you can do this, with help.

Love, Elaine