Neurophysiology test completed

staval

I have been on this journey for over a year trying to find the diagnosis.

My DH has severe sleep apnea (36 times per night) so we have had the cpac for 9 months now. Then they wanted his test done. Did all the blood work and MRI. Nothing noted.
it’s been hard because it’s clear he is having trouble with organization and remember dates and doing math.
he still reads and does legos and cycling and has no other health issues but the test results say mci with possibly Alzheimer’s.
The stress is literally consuming both of us and using our days in worrying.

How do you all cope and how long do we have??? Iam so tired and confused and we only just started. Iam in awe of the people here and what they have gone/going through.

I have to change in how I handle this stress because he can’t. Iam thinking for both of us and it’s just the beginning

RetiredTeacher

My husband was diagnosed with MCI and way back then I had no idea it would become dementia. At the time they said it was age appropriate. How difficult it is for our spouses and ourselves knowing something has changed but medical community didn't seem overly concerned and less than helpful. It's like they give us the news and we all sit back and wait for it to get worse. They monitor annually and we have to live with it every day, watching and waiting until it gets worse....and it will get worse. Make the best of every day and do as much with DH now as you can. This is the good time so maximize it. The hardest for me was getting to acceptance and to stop fighting our changed reality. It took me years. I wrote these down and posted them on the wall a year ago and read them every day. I hope they can help you.

Acceptance, face reality as it is, not as it was or as you wish it to be.

Stop fighting reality, start accepting it. It's not surrender, it's the strategic decision to stop wasting energy on what you can't change.

Profound words indeed.

Come here often, read, vent, get information. This is by far the most knowledgeable, caring and supportive help I have received during this journey. People here understand and care.

Michele P

I am sorry you are here. All of us have been where you are now. This time is precious. Use it wisely and enjoy every minute. Make a lifetime of memories now while you still can. Consult an elder care attorney, and get you legal documents in order. You can not wait on this. Do it immediately. Tour assisted living/memory care facilities and get your husband on a waitlist with a refundable deposit. None of us can predict where this journey will take us. Have a plan b in place. If something happens to you, who takes over his care? Prepare for this. Read the posts here for what to read and how to prepare. Ask questions. The people here are extremely knowledgeable and supportive. Take care of yourself.

staval

thank you both of these responses. you are definitely hearing me.
I try everyday to do this but seem to fail everyday. We just buried my mom and now his ( age 95) is requiring more care. She has no dementia issues, go figure. It’s hard to find lightness in all this to enjoy what time we have. I feel like Iam making his life even harder because Iam so worried.

I will reflect back on these responses to hopefully center myself. It’s grief in all corners right now and it is suffocating.

Thank you so much for your sharing it means a lot since I have no one to confide in.

SDianeL

I found doctors to be no help except for the Geriatric Psychiatrist who managed my DHs anti-psychotic meds. We understand how you feel. What helped me was getting organized and taking action. I made a list of things to do. See an attorney, learn all I could about the disease and how to care for my DH, learn how to dementia proof my home so he was safe, read the book “The 36 Hour Day” and search online for dementia caregiving videos, look into Memory Care facilities, get him on a waiting list, and come here often for info, support or to vent. You are not alone. 💜

Carl46

All I know about worry is to live in today. Yesterday is gone and tomorrow is unknowable. Imagine you are canoeing down a river so swift that you cannot paddle upstream. You cannot redo the stretch of water you floated down yesterday, and you don't know what's around the next bend, or how long the river is. You just look as far ahead as you can see and paddle hard in the rapids.

Stress is part of the journey. I found myself ever vigilant to what abilities DW had lost, so I could step up the level of care I provided. First, I ordered her Rx refills for her. Later, I filled her weekly med box. Later, I made sure she took her meds every day. Later, I made sure she took her meds and not mine. Later, I persuaded her to take her meds. Later, I made sure the put the meds in her mouth and drank water, rather than dumping the meds into the glass of water ("Take with water" can be interpreted various ways). By the time she contracted lymphoma and had to go to MC for care I couldn't provide, my blood pressure was so high that I was experiencing organ damage despite a handful of pills morning and evening (and I was looking for a MC to place her on the advice of her PCP and mine).

For stress relief, I tried meditation, prayer, and exercise. Some use drugs, alcohol, and adultery. None of these are completely effective, because your stressors will be severe and unrelenting. Having someone to share the caregiving so you can take a break is better than anything else.

I don't know how long this will last. We went from diagnosis in 2017 to placement in 2025 (and death from lymphoma 30 days later), and I should have placed her in 2024. I think you should mentally prepare for a marathon. Sometimes AD kills in three years, sometimes it takes ten years or more, and I know of no way to predict the duration of your LO's illness.

Sorry this is so gloomy. I try to be cheerful, even when I'm not feeling it, but I have truly not been able to find a bright side to AD.

Good luck to you. BTW, when you see the attorney to set up POA and medical advance directives, don't let the lawyer make your LO POA for you. At some point, maybe already, he will not be able to make financial and medical decisions on your behalf.

Michele P

The sadness, anger and stress you are feeling can be overwhelming. Find a therapist and/or a support group that deals with what we are living with to help you. I have relatives who have lived with this disease for 15-20 years. You need techniques in place and a support system to help you get through this. Your health will suffer if you don’t find ways to manage this incredible stress.

Lgb35

when we first started this journey I was given advice on getting an attorney for medical power of attorney, etc which we did. Now I am back talking to an attorney on how to protect our assets from the what if he puts us in a bad situation and leaves us open to a lawsuit. We are also looking at how to align our assets for Medicaid coverage. I have been worried about getting DH on Social Security Disability for the maximum monthly benefit at his age of 62 but as it turns out, that amount would put him over the allowed income to be eligible for Medicaid should I need it down the road. So much to think about