Spouse Newly Diagnosed

Sandy1956

Hello everyone,

My 65-year-old DH of 43 years was just diagnosed with dementia by neurologist with whom it took 6 months to get an appointment.  PCP diagnosed MCI last summer.  

Although I anticipated, no, expected, the dementia diagnosis, I am reeling from it being “official.”  I feel rage and despair and hopelessness. 

 I am grateful for this community.

Faith,Hope,Love

Hi Sandy and welcome!  You came to the right place for support.  There are caregivers here in all stages of caregiving.  And also, caregivers who have seen it all, done it all.  I'm relatively new myself and have found so much strength and guidance from everyone here.  I totally understand where you're coming from.  I knew there was something wrong with my DH before he was diagnosed.  But somehow the diagnosis made it so final.  I too was reeling from it all.  It took me a good 6 months to work thru all the feelings.  I think I went thru all the stages of grief during that time.  I finally was able to work my way thru it, but I will admit that I still have some good days and bad days.  There are days I can accept what is and then there are days I still get angry and question what is.  As time goes by and as I reach out to everyone on the message boards, it does get easier.

Sandy1956

Thank you so much, Faith, Hope, Love.  Incredibly, I’m able to exhale just seeing your post.

Buggsroo

Hi Sandy and welcome to the forum, you will get a lot of insight from here, it has helped me a lot.

Sandy1956

Thank you so much, Buggsroo.

rlpete

Sandy, 

Sorry you are here but I understand all the emotions you are feeling. My wife and I are also in our 60's. We had lots of plans which I know will never happen. We now just live with dementia everyday. My emotions change day to day but I've felt all of them at some point. 

This community does help. Knowing that you aren't the only one struggling. I lurked for awhile before joining. As caregivers we just do the best we can.  

60 falcon

Hi. I remember those early days well.  I had all the same feelings.  It was really hard, and still is.  Me and my wife might be nearing the end of this.  You aren't alone and you are in the right place to read and learn from other people's experiences. When you have questions and challenges to deal with, ask questions here and you'll find practical advice, opinions, and much support.

There's plenty that you need to take care of now while you both still can... All the legal stuff.  If you haven't gotten all that in order yet, do it asap.  Find a certified elder law attorney.

One thing I wish I had done a lot more of early on would have been to take more pictures and videos of my wife.  She never liked having her picture taken.  That's something I don't remember reading about here before.  Now that the end is looking to be coming sooner than I expected, I regret not taking more.

Ed1937

I totally agree with falcon. If you haven't already seen a CELA, NOW is the time to do it. Don't wait.

And the pictures -- my wife was like his. She hated to have her picture taken. She recently passed away, so there is no longer a chance to take more. Get them while you can.

Paris20

Sandy, welcome to the forum, a group of supportive and well-informed people who know what you’re experiencing. I was in your place in 2015. My husband was diagnosed with MCI by the neurologist (we waited six months too) and soon after the neurologist started referring to my husband’s Alzheimer’s, without ever telling us directly. 

As you likely know by now, there is no cure. My husband has gone steadily downhill. Then he had a stroke so he is now in a skilled nursing facility. He still knows me and our kids and grandkids but cannot remember anything about what is going on in their lives. Conversation is limited. His moodiness is controlled with medication. I visit him just about every day.

My advice is to enjoy whatever time your husband is still mostly himself…personality, sense of humor, etc. You’ll learn that reasoning or explaining are useless after awhile. Know the word anasognosia, not denial, where the person cannot understand his condition. Work around it. Tell fiblets, lies, if it keeps him safe and happy. Trust your gut even if it’s sending you scary messages. Driving, being left alone, trusting with executive functions like managing finances need to be handled sooner rather than later. See an attorney who specializes in getting everything in order for you. Finally, don’t sweat the small stuff. People who mean well may offer idiotic advice. Say thanks but don’t listen. Take time to find peaceful and joyful moments, no matter how brief, to keep your body and soul together. Good luck.

Annen1014

I have been through the same process. It took me longer to connect with ALZConnect so congratulations on your good sense. I find myself still occasionally shouting at DH, when he has done things that I have repeatedly asked him not to. And I have taken over more of the daily tasks that he used to do. He has been formally diagnosed for a year. I want him to feel as productive as possible. I have always done the cooking and for many years (while he was retired and I was still working), he did the kitchen clean up after dinner. I now find myself on a treasure hunt to find dishes he has put away in odd places, and the same thing with laundry. Just where did my red blouse end up this time? I try to look at it with humor, but sometimes I just lose it. And then I remind myself that he is doing the best he can.

Sandy1956

Thank you, rlpete.

Sandy1956

Thank you, 60 falcon.

Sandy1956

Thank you, Ed1937.

Sandy1956

Thank you, Paris20.

Sandy1956

Thank you, Annen1014.

Sandy1956

I am overwhelmed by all of your posts within such a short time.  Thank you.

Pat1618

Hi Sandy,

Welcome. Sandi. I just joined this site recently and don't feel so alone. although I feel sad and overwelmed by having to be responsible for everything. 

Bill_2001

I remember the beginning, the wondering why something was a little "off" with my wife's conversations and memory, and finally the diagnosis.

I am nearly seven years into caregiving, and I am blessed that I have been able to keep my dear wife home with me, even while still working full time. Thank God for adult day care.

I remember the fears of what was to come, the doctor's appointments, the preparation of documents with a Certified Elder Law Attorney (CELA). Please do that if you have not already.

What I was not prepared for was giving up plans, one by one. Little things I had to let go, then bigger things, then still bigger things. Until finally, my entire life is working and caregiving. There is simply nothing else left.

I was not prepared for what has amounted to a colossal waste of nearly a decade of my life.

Alzheimer's and dementia takes two lives.

Jo C.

Dear Sandy; so glad to make your acquaintance and a very warm welcome to you.   It is true, this is a wonderfully supportive place and a safe place to be able to bring all questions, concerns and just to vent feelings and be totally understood.  There is much experiential wisdom to be found here.

There is a really excellent writing that is available free online, it is, "Understanding The Dementia Experience," by Jennifer Ghent-Fuller.  The site for obtaining this has just changed and I do not have the current link; others will have it and get it to you.  It is one of the best writings ever for the basic information and the "why's" of what is happening from the early stages of dementia to the more complex later stages.

It is also important to know that so many Members who come here have Loved Ones (LOs) who are experiencing severe problems of one kind or another.  BUT:  Not all persons with dementia will have such expriences, situations, or problems.

In my family and in-law family there have been individuals with dementia, each was so different from the next and that is true of all of our LOs with dementia. The old saying goes, "If you see one person with dementia, then you have seen one person with dementia."

Example of that would be my step-dad who had dementia and his course of that was nearly 20 years; it was very slow. To the end he still knew who he was, who we were, he could feed himself, was still continent, if clothes were set out he could mostly dress himself with a bit of assist, and could still bathe in the shower with standby assistance. He had no judgment and his ability to use logic was shot, and there were memory issues for short term memory, but he still was reasonably content and spent most of his time watching old favorite TV programs in his recliner chair.  That is just one example and one that I wish everyone could have. He passed away in his early 90's from an unrelated cause.

So; one step at a time. Do see that Certified Elder Law Attorney (CELA) as early as possible as in quickly; that is key and that speciality really is necessary.  Put together over time a good support team of family, friends and of course a good primary care MD and a good dementia specialist. This helps us so much over time even if family and friends cannot help with hands on assistance, having the emotional support comes to mean so much.

Also, no need to thank each one of us individually; just a one time thanks for all will save your typing fingers unless you wish to do individual acknowledgement.

We are all here in support of one another and that now includes you too!

With warmest of thoughts being sent your way,

J.

Annen1014

I would add to the beautiful response from Faith Hope, Love that it is not a one time process. There are many losses along the way and you will mourn each one with anger, denial, etc. 

I went through it with my mother and aunt, and I am there again now with my husband. 

I remind myself frequently of the lines from Tennyson's Ullyses -- I won't quote them all here. That's Google's responsibility. I relate to myself "Tho'much is taken,  much abides."

I try not to compare my DH with his younger self, although of course  I remember very well. I try, and it's not always easy to focus on what we have rather than what we lack. 

This is a great place to be. 

Joydean

Hi Sandy, you have been given great advice, getting all your legal work done is very important. I can understand your feelings being all over the place, mine were too. Some days they still are even after many years. This site has a great deal of wonderful people and they are very helpful. Ask your questions when you feel like it and you will get answers. Best of luck to you and your dh.

Cherjer

Hi Sandy, You have gotten a lot of great advise and this forum is amazing. One thing we did when my husband was diagnosed in 2015 was to take some trips...here in the US to see family and then some big ones out of the country (even to Vietnam and Cambodia). We took our little family (son, wife and gran-daughter)  to Europe and to places in the US. Dh was able to fly up until Sept. 2021. We managed to make all this work and sometimes it wasn't easy. Now my dh has progressed rapidly. So...do what you can now so you have no regrets.

ldesrochers

https://alzconnected.org/discussion/61977/spouse-newly-diagnosed

I SO understand your feelings. My husband passed away a year ago from Alzheimer’s after seven years with the evolving disease. I wrote a book about my journey, sparing nothing. That is, the point of the journal I kept, now book, was to be as honest as possible about all aspects of this disease and the focus is on the caregiver and the roller coast of emotions which happens he/she experiences. Please no you are not alone in these feelings and you can survive it.