New Diagnosis for 56 YO Wife...looking for *anything* to grasp on to.

MaineJames

We are stunned, gutted, confused, scared, and heartbroken.

Yesterday, we received the results of a spinal tap that confirmed that my 56 year-old wife has young onset Alzheimers. She is due to start Monoclonal antibody treatment (Lecanamab) as soon as the Insurance is sorted out, and will also be starting Aricept as well.

Currently, I'd say that she is in the Mild Cognitive Impairment phase...forgets things, confused by some things easily, some mood swings (but not much more than normal..). We've reached out to the Alzheimers Association for information and to try to start building some kind of support network.

I am numb. The sheer amount of things We don't know about this is overwhelming. She is depressed, believes her life is essentially over. I know we need time to adjust and absorb and process this, but it's hard not to just jump to the eventual conclusion.

I guess I am here to say "hello", and to see if anyone has good advice on how to:

• Tell people.
• Stay in the moment and not focus on the dark clouds on the horizon.
• Find good information that isn't super academic, but not small-bite articles either.
• Keep our relationship healthy through this.

In other words, probably everything.

Denise1847

I am so sorry. Your wife is so young. You have come to the right place. The people on this forum will help you in many ways. Some of the things I learned from them is:

get your financial situation in order via a power of attorney (not limited but full power of attorney)

Read the 36 hour day. It is comprehensive and will be overwhelming. Read as much as you can but don't let it overwhelm you.

View Tepa Snow on You Tube.

If your wife is still able to travel, do it now and anything else she and you may have wanted to do.

Know that you and she are grieving loss, expectations of what you thought your life would be. Get counseling to help you and your wife. See if she will go to a support group and you attend one, as well.

Keep in mind that your wife doesn't do things to aggravate you. She really can't remember. Her disease will test your patience, but know it is not her doing it.

Stay social, active and engaged in activities.

Many others will respond to you with great suggestions. There are wise warriors on this forum. I am so glad I have these folks to learn from.

God bless you and your wife as you start this journey.

jfkoc

1. Right now I would tell no one. Let this diagnosis sink in.
2. While there are some dark clouds in the future they are often manageable. In other words, they do not fortell a major storm day aftger day.
3. This is, I believe, the very best place to get information. Everyone here is or has been a caregiver and besides offering personal solutions and support we really are very upto date on "things dementia",
4. Listen, share, listen... repeat.
5. Get to a certified elder care attorney. Now is the time to get all financial and health care documents in order!!!!!

You are here with us. You are no longer alone. You can count on u s to do our best!

-Judith

Just Bill

I am coming to the end of the road in this journey. If I can say anything to help it would be live life to the fullest what ever that means to you. Get those good memories stored. Live fully in the moment good and bad. Do not let your imagination run wild in a negative direction. Stay obnoxiously positive for both of you. Her disease is going to reinvent how she deals with the world. It will be up to you to reinvent yourself to compensate. Stay strong. You are going to learn patience you didn't know you had so be ready. Remember to take things one day at a time. She isn't going to lose her mind tomorrow. This is going to unfold relatively slowly. Stay ahead of it and you will be fine. Learn all you can about this disease. And it bears repeating. You are definitely in the right place. This place and the people in it have helped me keep my head on straight. A very valuable resource of information.

ThisLife

All of the above are very important as wells as the other medical steps you are pursuing. While there is no cure for AD there are a number of lifestyle habits that may help slow or delay progression.

• Stay mentally active: Play board games, read, do crossword puzzles, play a musical instrument or do other hobbies that require “brain power.”
• Get physically active: Exercise increases blood flow and oxygen to your brain, which may affect brain cell health. Wear protective headgear if you’re participating in activities that increase your risk of a head injury.
• Stay socially active: Regularly talk with friends and family and join in on group activities, such as religious services, exercise classes, book clubs or community volunteer work.
• Eat healthily: Follow the Mediterranean or DASH diet or another healthy diet that includes antioxidants. Consume alcoholic beverages in moderation.

From: Lou Ruvo Center for Brain Health -> Health library-> Diseases and Conditions -> Alzheimer's Disease

I've known a few people who were YO MCI diagnosed at the same time as my husband, (2014). They are still at MCI level. No guarantees but something you both could proactively do.

Wishing you both the best.

Ed1937

James, welcome to the forum, but sorry you have a need for it.

You have some great replies above. Making the best of your lives now is a great thing to do. Make your memories while you still can. Hold her close, and tell her that you will go through this together.

The suggestion to see a CELA (certified elder law attorney) is a great one, and is something you need to do as soon as possible. They can tell you what you need, educate you in how Medicaid works in your state, and they can handle whatever you need. Don't let "elder law attorney" keep you from making the appointment. That's what you need.

Here is a link to a good article about dementia. https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun  

M1

welcome James, though i am so, so sorry. I do believe this forum is about the best support you'll find anywhere. The shock of such a devastating diagnosis is going to take a while to process.

It is good that she is eligible for therapy, she is exactly the right candidate by the sound of it. So remember: because of that, her trajectory may be very, very different than anything you read on this forum: to my knowledge, we don't have any other members who have received it yet. So you are charting new territory, and many (me included) will be very interested to hear more about her/your experience. Here's hoping, at least there is something that can be tried (a better boat than many of us are in). I wish you both well.

Iris L.

I fell into a deep depression when I thought I might have Alzheimer's Disease. What brought me out of the depression was first of all, communicating daily with the members on the boards. Secondly, I came to a decision. I decided that if I did have dementia, I was not going out like a victim. I would learn what I had to do and take control of my life. True, there is no cure, but there are things that can be done to make the rough journey smoother. I got serious with Best Practices. I developed a philosophy which is keeping me going. My advice is, stay in contact with the members and learn from them. They know what to do!

Iris

harshedbuzz

I am so sorry.

CELA first.

You need to have POAs for both of you. With EO Alzheimer's your wife cannot be your agent going forward, so you'll need to pick someone else. Also time to work on Health Care Directives.

You need to understand Medicaid as the safety net should you not have LTC insurance and/or unlimited sums of money. A CELA can explain how this works in your state.

If your wife is employed, you should consider disability before she is fired for cause. If she's self-employed, you may need to start winding things down for her.

The piece @Ed1937 shared was my favorite in terms of helping me as a caregiver. This packet is also great. The stages section is useful for anticipating behaviors and also for parsing safety around things like cooking or being home alone.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

HB

Jami Boyle

James, from Jami named after a James. I read all the posts in response to your outreach and they helped me. Compassion, knowledge, sage advice. Affairs in Order, my task too. I just spent the weeks in emotional chaos and have worn myself out. Today, for the first time, I considered “surrender.” I’m such a fighter. But I’ve been expanding too much energy. Need to reel it in and sit my butt down to do the Affairs work. You are in my thoughts and prayers.

Anna2022

MaineJames,

Welcome (!) to this forum but I am so very sorry that you need to be here. I still feel like a newcomer here - I started seeing signs of cognitive issues in DH about two years ago and came to this forum about a year ago. It has been a life-safer, full of people who "get it" and full of concrete, practical information. I have taken the advice freely given here and more or less in this order:

1) Bought the book "36 Hour Day." Started reading it.

2) Went to a certified elder care lawyer for financial planning advice.

3) Updated wills, directives, Power of attorney docs, and HIPAA docs, etc - your lawyer will know what is needed.

4) Started reading here everyday, to get information and support I didn't even know I needed. Started researching and reading everything I could get my hands on about the dementias and caregiving.

5) Searched alz.org for my local chapter and started attending caregiver support groups online.

6) Finally got DH evaluated, after a year of trying to get him to agree to go. We are currently in the process (MoCA completed, MRI done this week and now waiting on those results). More to come, I'm sure.

6) Started thinking about a support care team for me and DH and thinking about what I need from each person so that if/when they ask, "how can I help?" I will have a concrete answer. I've talked to some family and some friends over the past year, slowly developing this support team. It has been slow because I found that I didn't have the energy to do it quickly. I can get overwhelmed by things more easily these days.

7) Started to look for the good that can come from this journey - some days are too hard (full of fear, anger, self-pity, sadness, frustration, loneliness, wanting to escape) but other days I get glimmers of the positives such as learning patience; learning what real comittment and love looks and means on a daily basis; finding that humor works wonders; learning to live in today - not the future or the past; and learning that caregiving is a tough but truly meaningful role.

In short, I am so very grateful for this online community - I feel less lonely, less hopeless and more connected to humanity. DH and I are older than you and already retired but I hope some of our experiences may be helpful. I'm sure others here have experience with many other issues, including EOAD and employment.

~ Anna2022

????

We found out almost two years ago that my wife at the age of 64 had Alzheimer's. It is a shock. Lots of good advice has been sent your way. These are a few things that I would recommend.

1.Go see an Eldercare Attorney and get your affairs in order. Since your wife is in the early stages include her with this task, I did.

1. Go do the things you and your wife want to while you can, make memories. We have traveled a lot since we found out about the Alzheimer's.
2. We were open with family and friends about our news. We don't try to hide it, we are just open to what we are dealing with.
3. Join a local support group.
4. Talk to your wife about her wishes for this journey.
5. Remember that this effects both of you and your family.
6. Take sometime for yourself when you can.
7. This is a bad journey, try to hang in there.
8. Good luck.

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MaineJames

Wow, I’m overwhelmed (i’m getting the feeling that that’s going to be the new normal) by all the wonderful responses. I plan to stay active here and share what I can about our journey, and hopefully start to be able to give back as I learn throughout this.

thank you for responding and for the kind words and sage advice. I feel welcomed.

Jami Boyle

Reading and learning. Today, after attending a local “Day Away” gathering for folks with AD yesterday, I had the realization that I need to surrender. I hate it. I hated attending that group. “No, I’m not playing bouncy ball with people,” etc. I stayed there to receive something. I think what I got was the idea , just this morning, that I need to surrender. I Googled meditations on surrendering. And did it, And I finally took my neighbor up on trying her electric bike. It helped. Ive spent the weeks crying and stomping my feet and cursing God. And it didn’t help. But I did this simple 20 min guided meditation-desperate-and my day was different. I’ve been working to be more kind to my husband. Let is help each other here. Good night.

Patty78

MaineJames,

I am relatively new to this site and I am nodding my head as I read through all the posts responding to yours. All great advice, and I would say - let it sink in. When you are ready, there is a book "I'm Still Here" by John Zeisel. This is a great reference - guiding us through this disease which affects our loved ones, and giving us practical advice. One surprising thing: DH and I went to the local Zoo this week! I know, it's odd - but we haven't been since our kids were small. He fought me at first, but turned into a little kid as we walked through the exhibits. It turned out to be a wonderful experience for both of us, and he kept telling me (many times!) how much he enjoyed it. Find those things that you enjoy doing together! This site is a Godsend, and I keep coming back. Waiting for a more specific diagnosis (DH has MCI) - he is 66 years old. You are in the right place!

Patty78

Also, I found a great local support group that meets once a month - this has also been a Godsend!

Lgb35

I am fairly new to this site as well. We have been working towards a diagnosis since 2019 and have a diagnosis of MCI. It’s unclear if it’s EO Alzheimer’s or FTD but either way we have embarked on this journey. We were overwhelmed at first ad well. DH just turned 60. I am 53. We are working to finalize our legal affairs at the advice of this group ❤️. DH is unaware he has a diagnosis and is still waiting for someone to tell him what’s wrong with him. I see things every day but for the most part they are small things like calling a hotdog a hamburger. I can carry on and just go with it. We recently spent a week with our son and he didn’t notice anything.

I guess what I am trying to say is this disease progresses slowly so it’s good to get your affairs in order as we never know when you will need them but it’s ok to pace yourself, let this sink in and start taking in the books and videos recommended but don’t allow yourself to become overwhelmed. You have some time to learn. Don’t miss out on the day to day living.

God Bless

Stacey

subversivevegan

These have helped me survive…

1. Having our legal affairs in order. When I have to invoke the DPOA, I am ready.
2. Talking/emailing/texting with close friends/people I love at least once a day.
3. Reading new (and old) posts here.
4. Meditating/listening to music.
5. Walking the dog.
6. Having ample medication on hand.
7. Developing a relationship with her medical team.  
8. Renewing my faith.
9. When all else fails: Getting in the car, turning up the radio and screaming from the top of my lungs.