Struggling

MEsad

Three days ago we got the diagnosis that my DH, 61 years old, has Alzheimer's. I am 58 and retired from a very stressful job at 55, looking forward to spending the rest of my life travelling and enjoying things with him. Upon my retirement, I was spending time with him 24/7 vs. just a couple of hours a day, and noticed things that were off kilter. But, it was 2020 and I thought a lot of it was the stress of COVID and getting used to being together all the time. By late 2021, things continued to get worse, and I convinced him to go to his primary doctor who started monitoring the situation. A year later the doctor said my DH had MCI. As things went downhill, we got referred to a neurologist in May of this year who quickly tested for all other possibilities and ruled them out. Fluid in the spinal puncture confirmed our worst fears. As hard as it was to hear the words, I was not shocked, as he was exhibiting all of the signs outlined on the ALZorg website that I had started reading. Now I am struggling and could use advice on where to turn. I found this forum, which I think will be helpful, and also plan to check out a local support group. However, I think I might need even more than that to get through this. Maybe a mental health professional with expertise in this area? Yoga to help with self-care and relaxation? This is not how we thought our retirement years would go down, and, to be honest, I feel that we are way too young to be doing this (not that there is a good age for something this heartbreaking). When I think of all that is ahead, I am terrified. He is supposed to start infusions to enhance his clarity, but as I understand it, those will not prolong his life, only potentially give him more quality of life for some time. It is all very overwhelming. I hope this doesn't sound too selfish, and I know I am supposed to embrace my role as caregiver, but it is all so new it feels surreal and insurmountable.

M1

Welcome to the forum, though I am very sorry that you have needed to come. You are both young, as you've said.

If he is going to take infusion therapy, that is hopefully a good thing--it seems to work best in those with early disease; and frankly, it's still too new to know whether it will prolong his life or slow progression of the disease (you are correct that the older therapies, such as the acetylcholinesterase inhibitors, do NOT slow progression of the disease).

Early advice to all newcomers is similar: get your legal and financial affairs in order now, while he can still give informed consent,. You need both durable power of attorney for him, and healthcare power of attorney. And sadly, he cannot /should not serve in those roles for you (nor as of executor of your will), so your documents should also be updated---I personally did this separately and in private because I thought to be removed from my papers would hurt my partner's feelings, when she was still cognizant enough to be aware of those things. You should also think ahead about your finances, how to protect your joint assets, and how you might finance institutional care for him should he need memory care in the future. A certified elder law attorney can help with all of those issues, and the sooner you do it, the better you'll feel. There are lists by location at nelf.org.

All of us spouses feel robbed when this happens. I personally have found this forum much more helpful than two local support groups I have tried. But all avenues are worth a shot, for sure. I wish you well.

Joe C.

MEsad, Welcome but sorry you needed to seek out our community. I think your ideas of finding a local support group, exercise and finding a therapist are an excellent plan for self care and I have used all three on a regular basis for stress relief, education and sometimes just to get through the day over the last 5 to 6 years. I don’t know if you’ll find a therapist with “expertise” in caregiver issues but a good therapist will provide you a sounding board when you need one. If you haven’t done so already, find a Certificate Elder Law Attorney (CELA) and get your legal and financial house in order ASAP. Putting this off can have disastrous results down the road when it reaches the point when your LO can not longer understand or sign legal documents.

Jeanne C.

I know it feels insurmountable. I think we all start that way. From what I can tell, it never gets easy. We do get better at it. Similar to your situation, my husband and I are youngish for this (he's 64, I'm 53). It seems so unfair and definitely not what we planned. But we handled the CELA items as quickly as we could, found some decent medical professionals, and I'm finding my way as a caregiver. The members of this forum are amazing and supportive. They've been a lifeline for me. The advice M1 and Joe provided above is a great start. I also recommend reading lots of posts and posting when you need to ask questions or just vent. It's a good group and everyone gets it. Take care of yourself.

Elshack

You do not sound selfish at all! You and your DH are very young and you now realize that this is the beginning of a very difficult journey. I second what the others have said re: getting a CELA attorney etc. Read all you can about about Alzheimer's ...36 hr Day is informative. I also suggest you see your Dr and if you find you are getting extremely stressed etc. the Dr may suggest a med for anxiety/ depression. You have to take care of yourself so belonging to a support group and getting exercise is definitely helpful.

This forum has helped me immensely. Nobody really can embrace the role of a 24/ 7 caregiver/ caretaker but we do it because we love the person but also there can come the time when we know we need help and we must seek help before our own health and mental stability is adversely affected. You are in my thoughts.

GothicGremlin

When my sister was first diagnosed with early onset Alzheimer's she was 58, and your DH isn't that much older than she was at the time.

I second the advice that Joe C. and M1 gave.

I was lucky, I found a therapist who was a social worker before she became a therapist. She had worked with people with Alzheimer's and their caregivers. It took a bit of looking but I found her. The gym and music have become my best friends.

Lastly, a book I found quite helpful is Somebody I Used To Know by Wendy Mitchell. She was diagnosed with early onset Alzheimer's when she was 58 or 59 (she's still out there posting photos on Twitter!). The book helped me so much as I first began navigating caregiving and working on how to interact with my sister. Peggy (my sister) even told me "somebody I used to know" is exactly how Alzheimer's feels in the beginning. I would never have known that.

Otterly

I first visited this forum after the first diagnosis of my DW two years ago. I was filled with hope and determination and encouraged by DR Bredersons book and his Apollo Health Care. (Highly recommend btw). I left the forum because , while supportive, I was not ready. I was discouraged by our future that I could predict by reading the many comments and stories.I didn’t want to believe it. But I returned, because truly this is a lonely task we have. Those that are not experiencing it cannot begin to understand what you are or will be going through. People here do.

While I still do believe the cure exists, it is not a “silver bullet”, but many small bullets. It was impossible to convince my LO, number 1,that she had the desease, and 2, now that she recognizes that she had it, her motivation to follow a protocol is nil.

Now I’m at the point that I have embraced my redirected mission in life and am so happy that I am here to help her. We are still in the early stages. We try to enjoy every moment we can.

I agree you should get your legal and financial house in order ASAP , as above, and know that there are many of us traveling a similar road.

Davegrant

Welcome MeSad to this forum. My story is similar that when I retired in 2017, I began to notice changes in DW's personality and behaviors and found this site by googling the internet and liked this one the best after looking at many others. I check here daily, and I belong to two support groups in the community and recently sought out counseling to help me deal with changes in my DW and the changes in our family. I also feel like you do that this is all surreal and certainly the biggest challenge of my life. I am fighting my own emotions everyday as my role in the family has changed so drastically in the last seven years. It seems that as DW disease progresses my challenges expand as a result. I am in a blended family and there are children, grandchildren, great grandchildren, and spouses. You are not alone as we are all brought together by this disease and common struggle.

Dave

Beachfan

MEsad,

Welcome to the forum and sorry for the reason you’ve joined us. You have already received valuable tips and information, ie: getting your legal affairs in order and investigating areas of self help for the caregiver. My advice is plain and practical; don’t go looking for trouble. You will undoubtedly read and hear all manner of horror stories affiliated with the progression of Alz.; wandering, aggression, incontinence, eating and sleeping problems, the list is endless. You may encounter some, all, or none of the issues discussed, so there’s no sense worrying in advance. Do what you can do with your DH while you can still do it- - traveling, dining out, engaging with friends and family, enjoy one day at a time. No one can predict the future.

I cared for DH at home for 11 years; he resided in a MCF for 17 months and passed on April 21. We had our ups and downs, but I made it through and you can as well. Stay strong and use this forum as a lifeline. You can do this.

PlentyQuiet

My DH was diagnosed a couple of weeks after his 61st birthday, I was 50. Our eldest was in college and our youngest was a senior in high school. Our planned out future was destroyed. We updated our legal forms with an eye towards incapacity and began making a plan B for DH's care if something happened to me.

It has been almost two years since then and things have progressed as expected. We had the first delusional event last week. I am feeling tired, sad, frustrated, guilty, selfish, and erased. I have support groups and a therapist.

This is hard, no two ways about it. The best decision I have made over the past months is to value my quality of life just as much as his. His safety and health are priorities, but so is mine. I also highly value getting the kids started in life and being a support system to them. This means sometimes DH's happiness comes third. I have mostly, almost, kind of made peace with that.

We are too young for this

Crushed

My wife was MCI at 58 and EOAD at 60 That was eleven years ago So thirteen years on this road. She has been in memory care for over 5 years.

I wish I had some great advice to add to the others. But I don't.

but you have my sympathy and support

MEsad

Thank you to everyone for sharing your experiences and advice. I can tell this community is going to be very helpful as this progresses.

toolbeltexpert

Mesad your user name says it all. Sorry you had to find us, but as so many have said this forum is a lifeline all the time, anytime. I took early retirement at 61 over 5 years ago to spend as much time as I could while it was still possible. It didn't last long though and we are 13 years into this since I first noticed the symptoms and last year finally had to get her to a doctor because it got out of hand. I placed her July 10, last year. As I was reading the reply posts you've received, I see the family that has been such a help to me and find great comfort here, we are not alone in this!

I have attended a caregiver meeting and found folks who had never heard of this forum. I highly recommend this forum, we recently had to undergo a website revamp that looked like it was gonna break us up. I am do glad we all hung in there.

Mesad you have to continue to care for you so you don't become a caregiver statistics. Yes all of life's plans change in a moment when you get that dx, but you have to continue to plan how to do you. Along with all the other new duties you inherit learn early on to do some self care, this is long haul stuff.

This place is sometimes like drinking from a fire hose when you've got a fire brewing you'll get looks of information some might not always apply in your situation but everybody tries to help as we've all been in the same battle hang in there.

Stewart

AnnieTB

I have not been on this site for a long time, but similar situation as well. I am now 65, DH is 69, and we have had his diagnoses of AD for about 2 years, but a long time in coming on, first Neurophychological testing 10+ years ago for a baseline when getting forgetful and confused on the computer at work. It is slowly progressing for him, and his social skills are his strength, but can’t figure anything out nor carry out a one step directive. I, too, felt like I was WAY too young for our retirement plans to be scrapped, but we have traveled, (though now much more difficult) and had lots of good times with friends and family, who are all supportive. I have been a researcher and read everything too, my best recommendation is to get connected with something like an Aging and Disability Resource Center (if you have such a thing in your area) for resources, support, knowledge, etc. I have a Dementia Specialist at our ADRC who is so helpful for me and for my husband as things change. All the best to you, thank you for starting this thread and I’m glad to be back on now!

eaglemom

Welcome to the message board that no one wants to be on. However, you will find it is a great source of information, support and frankly a place to just be yourself. Ask anything, someone will come along and be able to help you out.

This isn't how anyone plans for their retirement to look, of that I'm certain. We were 54 when DH received his diagnosis, 12 yrs ago. I like information and really feel knowledge and research are vital - at least to me. So I was very busy reading and trying to understand, etc. I then got us involved in several support groups and activities. Those were wonderful until Covid, but then I found virtual support programs and we've continued with those programs. Plan for each day to be different than the previous one and come here to find support.

eagle