Follow
Share
This question has been closed for answers. Ask a New Question.
Lisa, One of the reasons that I dislike, or don't take much stock in "stages" is that I think my husband was able to do things that he really should not have been able to do. On the other hand he was unable to do some things when he should have been able to still do them.
I truly think that it is whatever part of the brain is damaged.
I also think that my husband had Vascular dementia as well as the Alzheimer's. With the Vascular dementia there are little "mini strokes" that occur. My husband would go from being able to do something on Monday and by Tuesday he could not do it. He literally overnight could not (would not?) walk.
the facilitator of the Support Group that I now co run always said..."If you have met 1 person with dementia...you have met 1 person" the thought being that each person is different and the dementia effects each person differently.
There are people that get violent, ones that see their reflection in a mirror and think it is a stranger and want mirrors removed, some people get over sexed, and some that talk and talk, others like my husband become non verbal.

If there are things that you and your husband want to do, I agree do them now while you can. Who knows what will happen next month, next year let alone 3 years from now.

As I have told people Take joy in what he can still do mourn what is lost but do not dwell on it there are more losses to come.
Be kind to yourself.
If you are doing all that you can for him that is all you or anyone can ask of yourself.
NEVER promise that you will not place him in a facility that can manage his care.
You never know what might happen.
Making a decision like that is not an easy one to make and if you are having to make that decision then it is not a spur of the moment one.
I based my decision on safety. If it was no longer safe for HIM for me to care for him at home or if it was no longer safe for ME to care for him at home I would have had to place him. Thankfully he was compliant and I did not have to make that decision. I also had the help of Hospice with all the equipment that I needed.

I forgot to add..I also had my husband in a drug trial. I have no idea if that is why he did as well as he did for as long as he did. I will never know....and does it really matter now answer to that is no.
Helpful Answer (7)
Report
LisaMarieA Apr 2024
Am I able to join your support group?
(0)
Report
See 2 more replies
I just drove past our little town's Senior Center and the promo sign said there was a Caregiver's Support Group meeting. Make sure to check on senior centers and churches for support groups and Elder Care ministries. Maybe join Nextdoor.com and ask for resources from your actual neighbors in your community -- I find it a wealth of information and help (most of the time).
Helpful Answer (5)
Report
LisaMarieA Apr 2024
Thank you.
(1)
Report
Early onset Alzheimer's as I'm sure you've already been told can go on for 20+ years, so it's best that you get your ducks in a row now.
Things to get in order, wills, trusts, POA's, MOST or POLST forms, advance healthcare directives and the like.
Then get yourself educated on this horrific disease as knowledge is power and it will better prepare you for what lies ahead. The book The 36 Hour Day is great place to start, and Teepa Snow(a dementia expert) has a lot of great videos on YouTube, along with many books that she's written as well.
Then of course find a local caregiver support group that you can attend in person(preferably)or on Zoom. You will benefit greatly from one and know that you're not alone.
My local caregiver support group literally saved my life when I was at my wits end while caring for my late husband who had vascular dementia.
You can also look into the Adult Daycare Center in your area, as they do a fabulous job with folks with any of the dementias. You can bring your husband there up to 5 days a week and 8 hours a day. They will feed him breakfast, lunch and a snack and will have daily entertainment to keep him occupied. They also offer a "spa" day for those folks who are having a hard time getting their loved one to bathe or shower.
And if money is an issue they do offer financial assistance to help out.
Make sure too that you're taking time for yourself and doing things that you enjoy as you matter too in this equation. 40% of caregivers caring for someone with dementia will die before the one they're caring for from stress related issues , so you can see that self care is of the outmost importance.
And of course most importantly is that you just enjoy whatever time you may have left with your husband as there will come a day when you will wish for just one more day with him.
You're going to be ok. Will it be hard? Yes! It will be the hardest thing you've ever done, but you will come out of it a stronger, more compassionate and understanding person when it's all said and done.
May God bless you and keep you as you travel this very difficult journey with your husband.
Helpful Answer (4)
Report
LisaMarieA Apr 2024
Wow. God bless you as well. Thank you for all that important information.
(3)
Report
There are some facebook groups that I am aware of. I would also check on Alz.org and let them guide you to some support.

There are some here dealing with/or having dealt with what you are, and I hope you get more answers.

Let the docs know you need support; speak with social workers for guidance toward help.
I sure wish you luck.
Helpful Answer (3)
Report
LisaMarieA Apr 2024
Thank you for caring enough to reply.
(1)
Report
While not exactly "early onset" my Husband was 63 when he was diagnosed with Alzheimer's.
He survived for 12 years. (I hesitate to use the phrase he lived for 12 years. )
I was able to keep him home but he was compliant and he was never violent.
I did have help from caregivers.
He was a Veteran so I got some help through the VA and I got him onto Hospice early. He was on Hospice for almost 3 years. (he had had a fall and broke his hip. He did well with surgery and rehab but it was after that that I contacted Hospice.) As long as there is a "continued, documented decline" a person can remain on Hospice.
You do not mention your husbands age but see what services you and he may qualify for through your local Senior Service Center and if he is a Veteran see what benefits he may qualify for through the VA.
Also look for an "in person" Support Group. This forum is wonderful but you will need people contact.
A few things....
Learn to ASK for help
Learn to ACCEPT help
Get caregivers. The sooner the better so he gets used to someone other than you helping him.
If there is an Adult Day Program get him involved. It will help you and it will help him.
If he is a Veteran contact your local Veterans Assistance Commission and see what benefits he may be entitled to. And YOU may be able to get paid to care for him. Depending on where and when he served he might be entitled to a little help or a LOT!

OH...if you have not yet talked to an Elder Care Attorney do so ASAP. make sure you have all the paperwork needed to be able to make the decisions you will need to.
Helpful Answer (6)
Report
LisaMarieA Apr 2024
He is 63 years old. How long before your husband was unable to do daily tasks? He is in a drug trial right now. They say he is in the early stage. How quickly can I expect him to decline and what does that look like? Doctor told me "if you want to travel, there is a 3 year window to do it before it's not possible." Was that the case with your husband? Thank you for replying.
(0)
Report
See 1 more reply
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter