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What I have learned is this: You cannot reason with a broken brain.
If you try, all you will do is fight. It isn't worth it.
I want to echo advice from another forum member for you to begin ASAP getting him (and you) accustomed to having others provide direct care for him. I have found it to be a difficult adjustment. My husband defaults to relying on me and after 48 years I automatically respond. For me, I get out of the house at least twice a week and leave husband and caregivers to work on their relationship. If i have nothing else scheduled, I will go to the library and read or get a latte and walk in our urban park nearby. It is a lifesaver, I think, for all involved.
This may be a very long journey for you. Please take care of yourself. Do you two have children? If yes, I strongly encourage you to involve them. Keep them abreast of what is happening. If something should happen to prevent you from administering his care, they should be aware of details in order to be able to step up. One of our sons has actually expressed gratitude for the opportunity to be informed and to assist. If no children, think about who could step in for you and keep that person informed.
I am not currently in a local support group but I am trying a new one next month. I am in a book club that I have been with for 15 years. Also, I am in a dream interpretation group. (I am a retired therapist.) One of my friends in the Dream group recently lost her husband after 18 years with dementia. Her friendship has been priceless.
I share all of these extraneous details of my life because I hope you will continue to live your life. It will not be as expected but then life never turns out as planned. I wish for you peace and wisdom in your choices.
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.
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.
We had a poster that was diagnosed with early onset, John was 57 years old, he came here to tell us what he and his family were doing in the lead up to him no longer being "there".
1st off, he put ALL assets in his wife's name alone. This was to ensure her welfare later.
2nd, he asked his family to put him in a facility at least 100 miles from their home. He didn't want them to forgo their lives to visit him all the time when he no longer knew who they were.
3rd, he and his wife decided to do some dream vacations while he was still able to be with her and both enjoy the journey.
4th, they did the research, changed diets and added supplements to counter the brains deterioration. Did it help? Who knows but, I know being productive is definitely beneficial and that was accomplished.
He did everything he could, as long as he could. His family kept a close eye on him to ensure he wasn't in any danger or causing potential danger. He accepted his diagnosis and he was an active participant in his care. I think it is the best one could hope for with this type of diagnosis.
I have not seen John on the forum for a long time, so I assume his journey has changed at this point, he is probably to far advanced to even remember this forum but, I really appreciate the advice and him sharing his journey with us.
Remember, you matter too. You and dear hubby need to face and deal with the fact that his life and yours will not be what you planned. You need to get the legal aspects dealt with sooner than later. You need a good certified elder law attorney to guide you through your specific situation. You do not want to find out to late that you guys could have protected you from the expense of this disease.
Great big warm hugs! I can not imagine how hard all of this is for you.
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).
I can tell you that you are not alone and I am so sorry that you are going through this. Your husbands temperament and the type of dementia he has will determine what your next steps will be. Visiting an elder lawyer to get everything in place and your power of attorney established is important if you haven't already done it. You are going to have your hands full and there will be days when you aren't sure you can handle it, but that is what sites like this are for. You can vent, you can ask questions, you can just read about others situations, ect. I find comfort in it and hopefully you will to.
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