My husband's PCP performed a cognitive test in office during a routine exam and my husband did not do so well. So the PCP referred him to a neurologist who performed a SLUMS test. Husband scored 25/30 which is mild cognitive impairment. Before the next follow up exam I sent the neuro a letter asking her to be CERTAIN in her diagnosis and please rule out such things as HF Autism, depression, narcissism (his mom is a narcissist), normal aging and forgetfulness, or other possible causes for his low scores before labeling him with dementia. At the follow up, the neuro said she wants the comprehensive 4 hour exam done so she can be more sure of her diagnosis. We are still waiting for that appointment to be made and I am trying to have it expedited.
In the meantime, my marriage is on the rocks. Every time my husband forgets something (which is fairly often), needs to "get his bearings" when we are out driving, forgets to run an errand I asked him to do, doesn't check his phone for texts and voice mails, forgets a conversation we recently had (often) he gets very upset and accuses me of wanting to have him committed, making things up, seeing things that are not there, etc. Never mind he did poorly on both in office cognitive exams! He accuses me of having dementia because I make lists (chores, errands, shopping lists) and he claims if I did not make lists I would forget, but he refuses to make lists to help him remember things. (I am a highly organized person and have always made lists to stay organized.) He says that no one should worry until the day he is out driving and gets lost and cannot get home. He does not even realize that, when that happens, it will be too late for him to help me plan for our future and it will all fall to me. We have only been married 5 years! He is 8 years older than me. I am so upset and heartbroken and not sure if I can take this much longer. He won't let me tell his kids he is being evaluated and I have no one to talk to here. Counseling did not work out for me. I am the one fighting to assure a correct diagnosis and not just a label of "dementia." He cannot see that an early diagnosis will either remove the dementia suspicion entirely or help me to help us plan for the future if he does get a dementia diagnosis. I am simply exhausted. Has any other spouse been through this??
It sounds too like you are a doer and planner and your husband is a wait and see-er. When you have personality difference in place it makes things even more challenging. You want to be as best informed as possible and your husband wants to turn a blind eye to the situation until a crisis. I understand being a doer, I am one too, so is my Mum. My brother and Dad are in the wait and see camp. It is crazy making to try to make any sort of plans with Dad and db.
I think you know that regardless of the diagnosis, you are going to be the planner in your family. Your husband just does not have the capacity for that.
So next steps:
Get all your paperwork in order, this includes Wills, POA, Health Care Representative agreements etc. Keep in mind your husband does not have the capacity to be your POA, Executor etc. Who do you trust to act on your behalf?
Get your name on all the accounts for Transfer at Death. This includes the deed to your home, if you are not on it.
Make sure all the vehicles are in both names.
Double check your insurance policies are they up to date, House, Life, Vehicle etc.
Update your list of investment and retirement accounts.
Learn about Medicaid look back rules in your state and review any gifts or larger sums of money that could be questioned.
It is going to be a huge job and yes, it is going to fall on your shoulders.
If the first counselor did not work out for you, find another one. You are going to need support through this.
I would go against his wishes and talk to the kids, after you get all the paper work in order. There is nothing worse than being told after there is a crisis, oh yeah, Dad started testing for possible dementia 6 months ago. What! and you did not think to tell me?
One reason I will not tell his kids is because we do not have confirmation of anything other than "mild cognitive impairment" until he has this comprehensive test. If it turns out he has a personality disorder or Adult ADD and not really a cognitive or neurological impairment, there is no sense in getting his kids involved (and they will only go tell his ex wife and everyone else).
Thanks again for your great reply and suggestions. I appreciate it.
I would tell him that you are going to tell his kids. The only reason not to had better be good. What will he do? be mad at you?
I want to warn you, make sure you are taking care of yourself financially and health wise. If you have only been married 5 years the kids might come after the material things. I had that happen to me after 20 years of marriage. I can't warn you enough, take care of your finances.
This started in 2001-2, took over all household functions, 2006......been on this dementia journey since, now in Hospice....past year.
It is a nightmare journey.......suggest that you find companionship to keep you sane.
Perhaps one does not wish to recognize or ignores the signs, as I did.
But then had to take over all household functions in 2006 and it has been a down hill nightmare journey since then.
What makes it bearable for daily requirements/demands as a caregiver, to keep ones mental stability and function?
As I found a caregiver that was taking care of her mother(Ann)......we became one, in 2012.....this allowed her and I to meet our challenges, her mother passed away in 2014...and I lost her to colon cancer in 2018, and my wife entered Hospice.
Today we are struggling along, have two ladies that come in twice a week for me to shop and get out of the house.
Yes, an affair was very therapeutic for my mental/physical health.
2017-18, were two demanding/stressful years, as I was needed by both, my wife and Ann....but managed to meet the challenges.
An today, have no idea where or what the future holds as I continue on this dementia treadmill.
Un paid bills, over/under cooked meals, clothing from washing machine to dresser etc........then had testing.
This journey has been over 13 years, but once YOU accept that what ever the person does or says is no longer revelant for YOU to care for them......now YOU have to find a way to adjust to ongoing, never ending daily stress of owning YOUR own nursing home, YOU are the CEO, DR. RN. CNA, department head of Kitchen, Finance, Janitor etc. With One Employee.....YOU.
For me go keep sanity found a understanding lady an had an affair, which lasted for six years.....but then she came down with cancer and now I have two ladies that I have love for that both need attention and care.
Stress level almost off the chart......but had to recognize that they were the two that require the attention and help......understanding this made it easier to cope with......lost Ann Sept. 2018....
Was this good for me or bad.......I dunno, but have no choice to press on.
My entire life has been caregiving in some capacity, since my dad died when I was 19 and my mother made it clear that I was now responsible for her. She died 7 years ago and I remarried 5 years ago. This is my second marriage, my "golden years" hopes and dreams marriage, now shot to heck with blame and excuses and denial. Plus a narcissistic 92 year old mother in law that my husband is solely responsible for. Not sure I can do this.
We, the children and I had a meeting and outlined our plan regarding the grandchildren, what they would agree to so he could continue to see them. I agreed and we moved forward.
The first step in the overall scheme of things was for him to turn his drivers license in, if he did not I told him what I was ready to do, he knew that I mean't it, we went to the DMV and he turned his license in.
I would do all the driving, picking up the grands and be with him and them throughout the entire visit.
Your husband sounds like mine,.... in the beginning was in denial, I was not willing to play this game, we had real issues to deal with and we were going to do so, rowing in the same direction, or, I was no longer going to be in the same boat, not a threat on my part, just the truth. He decided that he wanted me in his boat, so with that we became a team rowing in the same direction.
Do what is right, for both him and you. Sending support your way.