Alzheimers disease and Dementia in other diseases classified elsewhere, unspecified severity, without behavioral disturbance, psychotic disturbance, mood disturbance and anxiety. He has shown mild signs for the last year or so, even though some days he is perfectly fine.
I am heartbroken and i know this is a huge blow to him--former corporate exec. and a Mensa. I will soon be 78 and have diabetes. We have a disabled son who lives semi-independently and for whom we are guardians. Both of our very competent daughters live 4.5 hours away.
What do I do now, or what do I do next? Any suggestions are welcome.
Thanks so much!
Not only do you have to make sure all your "ducks are in a row" but your husbands as well as your dependent son.
Not to nit pick but I am sure you and your husband both have had the feeling that this diagnosis was coming.
There are things that you will have to get in your mind.
What is your 'line in the sand"? Mine was safety. If it was no longer safe for my Husband for me to care for him at home I would have had to place him in Memory Care. If it was no longer safe for ME to care for him I would have had to place him in MC.
Find a good Support Group. Like shoes and bras they are not all alike and it might take some time to find one that "fits".
Learn to ASK for help.
Learn to ACCEPT help.
You will lose friends because you get busy and have other priorities. Make time for friends.
Get caregivers that can help you and give you a break.
Find resources that you can take advantage of. Does he qualify for help through the VA? Ask at your local Senior Center if there are any programs that can help.
Appreciate the good days. A bad day might be a good day in 6 months so as odd as it sounds appreciate the bad ones now as well.
Teepa Snow has some great videos on YouTube you can watch.
Alz.org is a wonderful website with an 800 number you can call to speak to a live person, and a chat forum like we have here, devoted to caregiver questions and concerns.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing Alzheimer's and what to expect with an elder who's been diagnosed with it. Medication isn't always the answer for 'behaviors', either; it's more about how YOU respond to HIM that makes all the difference.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia and AD.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
I also recommend a good autobiography, Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's by Diana Friel McGowin
Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out.
https://www.amazon.com/Living-Labyrinth-Personal-Journey-Alzheimers/dp/0385313187/ref=sr_1_10?crid=38BXLPJ24UIAM&keywords=alzheimer%27s+autobiography&psr=PDAY&qid=1665615924&qu=eyJxc2MiOiIwLjAwIiwicXNhIjoiMC4wMCIsInFzcCI6IjAuMDAifQ%3D%3D&s=early-access&sprefix=alzheimers+autobiography%2Cearly-access%2C160&sr=1-10
The other book I recommend is The 36 Hour Day which is more of a reference book which will answer questions as they crop up on a daily basis.
Knowledge is power. Arm yourself with as much info as you can, and make sure DH has a good doctor who is FAMILIAR with the disease and can help you both navigate the journey together.
Research Memory Care Assisted Living Facilities so if/when the time comes you can't manage in home care anymore, you'll have that on the back burner. Also have in home caregivers lined up so you can get some well needed respite time for yourself.
Wishing you the best of luck and sending you a hug and a prayer for peace.
Years ago when my parents were given outdated 10-minute 1950s tests, with instructions like “draw a clock…” etc., I decided not to let their future rest on the outcome.
Mom was shaky with nervousness and her clock looked shaky. (Later, in my home, she drew a perfectly nice clock). If her clock would have been terrible, I would have cared for her anyway because I could and I wanted to, come what may.
I read once that Alzheimer’s can only be truly confirmed in an autopsy. The term “dementia” is thrown around and doesn’t relate to a particular medical condition but winds up on medical records every time someone gets a question wrong.
Once when Dad was told a test “story” by a neurologist and asked to recall the details out of a ten minute list of facts (it sounded like an SAT question, but Dad didn’t have the advantage of being able to see the text), he couldn’t remember the character’s street address. Neither could I. He could, however, understand and remember the story.
Both my parents failed on those tasks, but I still kept them at home and cared for them until the end, because that worked for us all. If it doesn’t work for you, that’s okay, because there are so many options available that will meet your various financial and family needs.
It wasn’t always easy and at times I needed help, but in our case, everything worked for us at home. I brought in CNAs to help with personal care/hygiene (showers), because that was awkward for me.
if they would have lived in a nursing home, we would have made that work too.
I wish you the best, and remember there are no wrong decisions if a certain set-up is working for you.
No matter what, people will criticize your choices if they don’t agree (even strangers on this forum), but this is Your life.
And know that you and your husband are not alone in this. If possible find and get involved in a local caregiver support group, as being able to walk side by side with others going through similar things as you will be priceless, and can save your life as it did mine, when I was so overwhelmed with everything.
I've been involved with a support group in my area for over 4 1/2 years now, and although my husband who had vascular dementia has been dead for 2 years, I choose to stay involved to now help others who are still going through it.
And it's amazing to me just how many people in my support group are now or had been caring for their spouses who were doctors(a lot of them, I mean a lot!)lawyers, professor's, presidents of companies etc. Alzheimer's/dementia doesn't discriminate.
And we were just talking in our group today just how important it is to just take one day at a time(sometimes just one minute at a time)and don't try to worry too much about what may or may not happen in the future, as often what you worry about never happens.
But one thing is for certain, and that is the fact that he will continue to get worse, and there will be nothing you can do to stop it or slow it down, and that in its self can be very frustrating and saddening.
So please take care of yourself. Make sure you're taking time away just for you to do what you enjoy, as you matter too in this equation. Often caregivers neglect themselves and that can lead to a whole host of issues both physical and mental, and 40% of caregivers caring for someone with any of the dementias will die before the person they're caring for due to the stress of it all, so again PLEASE take good care of yourself.
So remember, you are not alone in this. There are plenty of resources out there for you and your husband. You can contact your local Area of Aging Agency, Senior Services, the VA(if applicable)and also an Adult Daycare Center.
None of us who have gone through or are going through what you are, would have chosen this path, but I can tell you from personal experience that in most cases(mine included)it makes you a much stronger and better person in the end, and for that I am grateful.
God bless you both.
I would also think about locking his credit with the three credit reporting agencies. You can lock it and unlock it as need be and only allow him to carry a credit card in his wallet to use for purchases. That way you can monitor it for fraud. My father lost his wallet a couple months ago and luckily I was able to lock his accounts quickly, but not before someone tried to make a $5000 purchase at the Apple store. Luckily I had set up alerts on the accounts and was able to decline it as a fraud and the charge was declined.
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