Possible spouse Alzheimer’s

Wilkie43 · July 12

I’m brand new to this group.
My husband and I are on a journey to find out what is happening with his health. He has multiple issues (heart, GI, lungs) that we are having tests and appts. When his PCP ordered lab work, I asked him to check his Ptau217 as I’ve noticed some behaviors that seemed off.
Well, the Ptau217 came back at .44 with a normal cut off is .18. I only received this yesterday morning. Obviously, I am in shock.
We saw a neurologist 6 years ago who diagnosed him with mild to moderate white matter disease of the brain. My research shows that this is not necessarily connected with Alzheimer’s. He has had another brain MRI recently and it shows volume loss in the brain.
I know further info will be coming from all of the appts we have.
I am just so frightening and feel as if life as we know it is over.
Has anyone else felt this way and if so, anything help?
We have no family in the US at all so I am basically alone on this journey. My husband is 83 and I am 68.
TIA

Ed's mom · July 12

We are just starting this journey, it's frightening to her and to me. You'll meet friends here and learn a lot but mostly, you aren't alone anymore.

jgreen · July 12

Welcome @wilkins57 to the club no one wants to join. So very sorry you have to be here.

This is a wonderful group who is here for you. Please stay in touch with us. We’ve all been in your shoes during those initial days and months. It is sad, validating that you sensed something was off, overwhelming, and any other emotions you can think of!

Best advice I can offer at this point in time is to try to take one day at a time and pay attention to DH’s current behaviors and abilities. Start making mental or written notes to have and share during your appointments. Get in touch with your local Elder Affairs Office or Agency on Aging about local resources for you. If your DH is a Veteran, be sure to contact Veteran’s Affairs - I understand they have a lot to offer.

In the near future you will want to get all legal affairs in order - durable power of attorney for both of you (and someone other than DH on yours), HIPPA, Healthcare Surrogate, Wills/Trusts. An Elder Care Attorney is best person in this arena - pricey but worth it. If DH is still driving, he shouldn’t be! Check this site for other posts about driving and advice that is in those replies.

There is a program called the GUIDE program that is Medicare reimbursed up to an annual limit for members on straight Medicare A&B (Not Advantage plans). I am having my initial ‘Intro & Screening’ interview on Monday. I recommend you look into that when you are ready, but perhaps not in these initial days.

Lastly, you need to find ways to take care of yourself. Easier said than done, but If you are going to be a caregiver, you need to be physically, mentally, and emotionally capable. Take short breaks to do something for yourself, even if a nice bath/shower if DH is napping. When you are ready, let family or close friends know. I hope you will find some who want to help in any way they can. Maybe sit with hubby so you can take a break, shop for you, help repair something around the house, or prepare a meal for you. It was hard for me to admit I couldn’t do everything for myself, but I learned to ask for help and good friends and family have been there for me.

God Bless you and your DH. We all care about each other and you!

mebartol4 · July 12

Hello wilkie43,
I am new to the group. My husband brain MRI and ptau17 also came back with very similar numbers. Your story sounds much like mine.
The psychiatrist confirmed ALZ through MyChart because our next appt isn’t until November. He has progressed significantly since his original brain MRI 18 months ago but he seems quite independent so far.
Like you, my husband has several health issues, but also severe pain from spinal stenosis along with heart failure and ejection refraction of the heart which means it’s slow to pump blood out of the heart. He has lymphedema that he’s had for yrs from a radical cancer prostectomy and now is showing cellulitis in his leg.
It almost feels like the ALZ is a more minor worry compared to everything else.
We moved to Baltimore in 2020 to be closer to grandkids.

He is 83. I am an active 71 year old.

I’m feeling quite alone and isolated, although I’ve developed some good friendships here.
Grateful to have found this group and to hear your stories.
I wonder what’s next and it’s hard but I’m trying to stay focused in the day.

H1235 · July 13

Welcome. I will just give you a few link in case you haven’t run across them yet. The debat is what most of us use to determine our loved ones stage and to brace ourselves for what’s to come. I also agree with other about the importance of seeing a lawyer, making sure you have access to all finances and online passwords for everything.

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

DBAT.pdf

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/

https://iona.org/therapeutic-fibs-ok/

Michele P · July 14

https://alzconnected.org/discussion/76532/possible-spouse-alzheimer-s

Welcome. If your husband has not already had a PET scan of his brain, request it. That will give you more information and confirm a diagnosis. A neuropsychiatrist can conduct tests to determine what type of neurodegenerative disease he has and what parts of the brain are impacted. This will tell you how the disease impacts his every day functioning. I would see an Elder Law attorney as soon as possible to prepare legal documents while he can still sign them. He should not be driving. Your insurance company will not cover an accident, and you can get sued for everything you own. You will have to take over all finances. Get a list of all accounts along with log on and passwords. Do the same for bank accounts, phone, computer. Buy the book The 36 Hour Day. It is an excellent resource to help you prepare for what is coming next. Call your local Council for the Aging and find out what services are available including adult day care and transportation. Get quotes from in home care agencies. Put a plan b in place that involves putting him on a waitlist at an assisted living/memory care facility in the event you can no longer care for him. The wait without this could be over a year. Buy TILE gps trackers and put on wallet, keys, phone. It tracks the items and person.
Come back here for help and support. The people here are extremely supportive and knowledgeable.

SDianeL · July 14

Welcome. So sorry about your husband's diagnosis. This is by far the best place for info, support or to vent. If you have questions, someone here will probably have an answer based on their experience. I felt so afraid and alone until I found this group. The people here gave me courage to face the disease and the knowledge to care for my husband. Unfortunately the doctors weren't much help once the diagnosis was made. You will need a Geriatric Psychiatrist to manage his medications. They are the best type of doctor to manage medications for Alzheimer's behaviors. Ditto on the book "The 36 Hour Day" which helped me understand the disease early after his diagnosis. 💜

dcare45 · July 16

Hello Wilkie43

I know I felt the same way at the beginning. I'm glad you found this group. I won't rehash all the good suggestions from the above comments except our need for an Elder Law Attorney. By the time we got in to see one my DW had progressed to the point she couldn't sign legal papers. Her secondary Health Care POA had passed away and I could not assign another incase something happens to me.

I was also slow in joining any support groups. I thought I could handle most things myself. I wish I had much sooner. Having a place to vent, get suggesting, and being in contact with others going through the same thing has helped me allot. You're not alone.

Possible spouse Alzheimer’s

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