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My husband was diagnosed with MCI one year ago. I didn’t see major changes in his condition until this past September. Our third visit to the neurologist is next week.


Around September, I noticed his short-term memory was worse. He is now repeating himself in the same conversation. He also started having ED issues. He is having some issues with paying bills. He thought he paid 2 insurance policies, but found out he hadn’t. (He still refuses to relinquish control over paying bills.) I try to keep an ear open when I hear him talking on the phone, so that I can keep up on what he is doing (and to make sure he isn’t giving away the farm to some spam artist).


He couldn’t figure out how to plug in 6 lighted Christmas decorations. He said, “I know what has to be done, but can’t figure out how to do it.” So, he knows something is not right. It takes him 3 hours to complete seemingly simple tasks.


He seems increasingly insecure. We went to our son’s house for Christmas, and my husband seemed so uncomfortable. If I sat down, he sat down. Ditto, if I stood up and walked somewhere in the house. If I went outside, he went outside. Ditto if I came back in. He does that at our house, too. Sometimes, I just leave and go to the store by myself just to be able to breathe.


The only good thing while we were away was that he took a shower after I took did (which was every morning). At home, he takes a shower every 3 or 4 days, even though we discussed this at his last doctor appt.


When I wake up in the morning, I try not to move because if he knows I am awake, he always wants to put his hand on me. We have been married for 33 years. It was never like that.


We are building a house and moving out of state. (That’s been in progress for a year.) We are about 4-5 months away from moving. I am doing everything — from keeping in touch with the builder and financial institution to packing. I try to keep my husband informed about what is going on, but I know he won’t remember. I have been the one packing things we won’t need in the short-term. He can’t even make a decision about what clothes to get rid of. He tried twice.


The neurologist said (after the fact) that moving is going to be hard on him (to which my son said she had no right to opine about that…). Regardless, we are stuck in the contract. We will be closer to our grandkids; and I think it is a good neighborhood for us.


My guess is that he has moved from having MCI to mild dementia. The neurologist cannot diagnose dementia, though (she said). I thought initially that he had Parkinson’s, but he seems to have many of the same symptoms as vascular dementia from hypertension. He has been on Losartan for about 6 months, but he had high BP long before that.


I know his condition is only going to get worse. And, if it is vascular dementia, the life expectancy is less than Alzheimer’s. I am just overwhelmed at times. Sometimes I sit, not knowing what to do next. Then I find myself wishing that if something was going to happen to him, that it would happen before we move. Then I feel guilty. Ugh.

Dear Mapotter:

I feel your pain. This is overwhelming to say the least. My wife of 31 years has many of the same behaviors your husband exhibits. It is exhausting to be the one responsible for every detail.
But it is reality. We cannot escape the details of caregiving but we can take respite times. Going to the store without him is just fine. Going out for the day is also fine. Don’t feel guilty.

Do you have a caregiver to come in and help? If not, I would suggest hiring one. My wife and I are fortunate in that we have LTC insurance which pays for a caregiver to come in and help. She helps with meals, laundry, cleaning & cares for my bride, 5 days a week. There are days that I leave for the entire day and Jan is fine having a caregiver with her. But it did take time for her to get used to having a “house cleaner” who comes in to help her.

I would also suggest getting involved with a caregivers support group. Contact the Alzheimer’s Association at ALZ.org. They can hook you up with a local chapter. Sharing your frustrations and tears with others going through this is very helpful.

There are also many financial resources through ALZ.org that can help pay for care while you get away for a few hours a day. Another possible resource is the Veterans Administration. If you or your spouse is a vet, the VA has a program called Aid and Attendance. I believe they pay up to $1500 a year for care. You’d have to check on that.

Two books I recommend are:

Keeping Love Alive as Memories Fade by Gary Chapman

and

Grace for the Unexpected Journey by Deborah Barr

Both books have helped me walk this journey and we’ve only been at this for 15 months.

My prayers are with you.

Terry
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Reply to Terrysmellgood
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What you are feeling is is completely normal. Those of us in the same boat are feeling just the same feelings. A wise woman told me one time, "Just do the next thing. " Sometimes I just tell myself to brush my teeth, then pick one more thing, then one more thing, etc. It helps me not to feel overwhelmed. It sounds like you have a lot on your plate.
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Reply to WearyJean
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Ask your son this question: If his father's neurologist has 'no right' to say that a move will be difficult for him, who DOES have such a right? My goodness, your son is either very deeply in denial about his father's condition or he is clueless about what a doctor's role IS in a patient's life! You saw your husband's discomfort firsthand when you went to a different home (your son's) for Christmas! He was closely shadowing you b/c he didn't know what the heck to do.

Any and all change is hard for a person suffering from dementia. The first thing that happens when a resident moves from regular Assisted Living into Memory Care is their world is greatly shrunken down. Why? So that it's easier for them to manage. Smaller room, less gadgets (like a microwave) to figure out how to use, smaller activity room, a bldg set up in a square so they don't get lost when walking around, etc. They're shown a choice of 2 plates for a meal instead of a menu to ponder over, so there's less of a decision to be made. When a person's brain is compromised, all decisions are difficult (as you are seeing with your DH unable to decide which clothes to donate).

It doesn't really matter as much what 'type' of dementia he's suffering from; just that he's on a path of progression where things will get worse over time. I don't blame you for being overwhelmed, and you need support from as many people & services as humanly possible. Especially now that you're moving and have all that added stress on your plate that you're dealing with alone. You can't rely on DH to help you with anything anymore; in fact, he'll just make things worse by double paying bills or asking so many questions it'll take you 4x as long to get a task done than if he wasn't trying to 'help'. You're all alone with the management of TWO lives now, a new house, and preventing him from driving the car too, at least eventually. Try not to feel too guilty about having thoughts of wishing he'd be gone before you move; dementia winds up ruining lives and stripping away the quality of them, too. I know. My mother is 95 next month with advanced dementia (thought to be vascular) and I pray God takes her on a daily basis.

As far as sex goes, if DH gets too obsessed with it, speak to his neurologist who can prescribe meds to calm him down a bit in that department too, if need be.

Pick up a copy of The 36 Hour Day which is a fantastic reference type of book on the topic which is very helpful and answers a lot of questions you'll have. TheTeepa Snow videos are wonderful too, as has been mentioned.

As Barb said, your DHs neurologist will no longer be useful if she's 'unable to diagnose dementia' for whatever reason. He's going to need a new doctor who IS familiar with dementia and perhaps she can recommend someone in the new town you're moving to? Your son should be prepared to help you and his father in any way he can as well. Some 'children' find it very hard to accept their parent has developed something like dementia, but the best thing he can do is to educate himself so he can be of help to BOTH of you now. I hate the fact that my mother has dementia and yes, it makes me uncomfortable, but if I were to turn away from her, then what? And I was very upset my father had a brain tumor, too, but as an only child, I felt it was my duty to be there for him right until he passed away. I learned all I could about both of their afflictions so I could be of help to them instead of another ball and chain around their ankle.

Wishing you the best of luck dealing with everything you have on your plate. I know it's a lot, so I'm sending you a hug and a prayer for strength and peace in the midst of the uncertainty.
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Reply to lealonnie1
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Mapotter Dec 28, 2021
I can’t thank you enough for your reply. I agree about my son. His big thing when his father was diagnosed with MCI was that we had to move near them NOW to be closer to the grandkids. (We will be 2 hours away, instead of 6.) It had nothing to do with what was best for his father or me for that matter. I had also mentioned that his dad may have to go into a nursing home at some point (knowing what COULD happen down the road). I like to prepare myself. My son got mad. I took care of my mom in her house for 2 years. She was 95 when she passed. Even though it was hard, I could handle her physically. I cannot physically handle my husband.

My husband and I talked about moving for several years — to go somewhere where the winters are milder. So, I figured if we were going to do it, we needed to do it soon. I am 65 and my husband is 73. I did not want to move when I was in my 70s.

We will see how much my son is willing to help out. I think I will be on my own. (My husband has no family. And my daughter wants nothing to do with him.) He does have VA benefits, so that is good. And, it does sound like the neighborhood where we are moving is pretty close-knit — all being transplants from other states. I certainly will not EXPECT anyone to help me, as I never do, though. I have always done things myself, without asking for help unless I am really desperate.
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I think that your son may soon need a reality check to understand what you are going through. Is he close by and able to see what's going on for an extended period of time? It would be great if he could be helpful to you rather than being dismissive of the doctor's reasonable comment. Get into a support group as soon as you can find one.
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Mapotter Dec 28, 2021
Our son is about 6 hours away now. He does not want to drive to see us anymore because he says it is too far with 2 kids…. Not my fault. When we move, we will be about 2 hours away. I have asked him a few times to assist with something with the new house, and something has always come up. So, I will not ask anymore. If he offers, fine. I am in contact with my husband’s good friend, who has been a good sounding board. He moved to Nebraska, though. We are on the East Coast….
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Neuropsychologists give a specific (and long) test to determine status of cognition/memory. My husband's hospital Dr. ordered that after a stroke, and then another PCP Dr. ordered it several years later. You can ask the doctor for that when your husband can't hear. In both cases they said "No Driving". And also that he required 24/7 care. He was obviously further along than your husband but those were necessary medical and legal steps to take. It was also a necessary tool to get him on appropriate long term government insurance. One of the symptoms in my husband's cognitive illness (brain injury and now Alzheimer's) is that the patient doesn't think there is anything wrong with them. Your son will have to get used to the idea. It has reached the point where we will now be placing my husband in a nursing home after many years of care giving at home before I do down before him from the stress. It's good you are moving close to family. You will all need that.
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Reply to liladee
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You sound overwhelmed. Please consider joining the Alzheimer's Dementia Caregiver's FB Support Group. It is a place where you can find support, obtain some good tips, and vent without judgment.
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share

And watch Krista Mesenbrink's videos on tips on YouTube for dealing with dementia patients. They are great.
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Reply to NinjaWarrior3
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OMG! You are me and I am you! Well, we don’t have kids, but so many similarities.

My husband lost his job, I noticed he was having difficulties remembering small stuff. I finally got him to see a neurologist. He was diagnosed with MCI.
since he was no longer working, and he just turned 65, we moved out of state. I had to do everything…leading him by the hand the whole way. We packed up a large house, put lots in storage, put out house on the market (had to live there while it was being shown…so it had to be spic and span and we’d have to get out on short notice for showings). Luckily the house sold within 6 wks.

We went house shopping in another state for a weekend, made an offer on a smaller, cheaper house. I arranged for out of state movers. We moved lock stock and barrel to a new area. It was one my husband had spent some time in before, so it wasn’t totally unfamiliar to him, but a HUGE change nonetheless.

About 6 mo after move we saw a new neurologist and got a neuropsychologist eval and was told dementia. My husband is very needy. We are basically joined at the hip. We sold my car when we moved, so we only have one car now. Trying to set up a new house, unpack etc with someone with dementia was not easy. None of it was easy. But we got thru it and have been in our home 2 yrs now. Yes, the simplest of tasks is a real pain! But I keep thinking we got thru so very much, we can get thru anything. I know the worst is coming for my husbands health. We will get thru it. How? Well, like you I’m not quite sure. I still cry often. I’m still navigating this world kinda by myself…I was one of those throw backs to a 1950’s housewife…I never handled bills, I don’t work, do any repairs etc. My husband did everything. So selling a house, buying another, the move, now I’m in process of getting power of attorney for everything. I have to make sure taxes are paid, insurance is all paid, all monthly bills. It was (is) so hard! My husband realized he was having trouble with keeping up bills after we moved and we used to sit and do it together. Now he doesn’t even pay attention to me when I pay bills. I’ve arranged for our cremations, and got our wills in order (well, actually my husband did that years ago), I just added a alternate executor.

The driving thing is still a bit of an issue. The issue is I hate driving! I’m not good at it. I still get lost here! And now when I’m
lost, my husband is no help. But that will come shortly. He doesn’t go anywhere without me, so we are literally always together.

You will get thru what you need to do. When I look back on what I’ve done so far, it’s unbelievable what I’ve accomplished. Find online or in person support, this site helps me (sometimes it makes me cry when I see what others go thru and I know it’s coming for us). But knowing the problems are not unusual and that you aren’t alone does help. Feel free to personal message me if you need to. I’m probably not much practical help, but again, you are not alone.
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Mapotter Dec 30, 2021
Thank you so much. I may take you up on the private messaging
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Moving will be difficult for him but it will be easier now than it would be in a year or 2 years.
The following you around is called “shadowing”. You are the safe person he knows and trusts.
As far as wanting to hold your hand, that can also be a security thing for him. It may. Also it may indicate a desire for intimacy. This is up to you. Some have no interest in sex, others hyper sexual. This can be a tough spot, your entire relationship changes from Spouse to Caregiver with caregiver taking the leading roll. Very difficult to think of sex when you have just changed a soiled brief.
If you have not yet consulted with an Elder Care Attorney do so. Make sure that all your papers are in order.
If you can not get him to relinquish control of paying bills try to set up as many as you can on auto pay so that the bills don’t arrive as “due” they will arrive as paid. And you will not run the risk of non payment.
If your husband is a Veteran please contact your local Veterans Assistance Commission and find out what benefits he may qualify for.
Other than this forum do try to find a Support Group in your area.
Look for Adult Day Programs in your area. It will give him something to do, it will give you a break.
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Reply to Grandma1954
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Mapotter Dec 27, 2021
Thank you. Yes, fortunately, we did get all our papers in order last year. A few years ago, he also contacted the VA.

As far as the intimacy… I could take it or leave it. I am on HRT, which helps. But, with his ED, I certainly don’t want him to feel even worse….
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Your husbands neurologist was right when she said that the move would be hard for him. Any change for someone with dementia is very hard, as they do much better with routine. They do not like their routine disrupted as you will learn soon enough.
And the reason your husband seems to be glued to you at times is that he more than likely feels safe with you, as he is aware that he is having issues and it probably frightens him, and when he's near you he feels more secure. He also probably just needs to know that you're near.
When my husband(who had vascular dementia)first came home from the hospital after almost dying from aspiration pneumonia, and was completely bedridden, he would constantly call my name whenever I left that living room where his hospital bed was. Our house is small and all on one level, and I would always tell him where in the house I was going and why, but yet he would call for me. I later came to learn that he just wanted reassurance that I was near by in case he needed me, which is common with folks with dementia. It drove me crazy for a while, until I came to understand it more.
And now that he's gone, I actually have awoken several times to him calling my name, and it has brought me comfort.(funny how that works huh?)
If in fact your husband has vascular dementia(which is the most aggressive of all the dementias)his life expectancy is only 5 years, so try and make the best of things and make sure you get "your ducks in a row," so you won't be left unprepared.
My husband was diagnosed(by his neurologist)with vascular dementia in July 2018, though he was showing symptoms at least a year prior, and he died Sept. 2020.
It's not an easy road that you're on, but know that you're not alone and that you will get through whatever lies ahead. God bless you.
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Mapotter Dec 28, 2021
Thank you, funky grandma. It is good to “talk” to someone who has been there. I guess that is why I would like to know if he has vascular dementia — because the life expectancy is about five years when symptoms start. That has been at least 4 now. So, I am preparing myself (or at least trying). He has most of the symptoms of vascular dementia. Though he did play football when he was younger….

Did your husband go to the later stages fast? Was it a result of a stroke or high BP?
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Don't count on vascular dementia being a short sentence. I don't know when my mother was first diagnosed with it because we were not in contact a lot during that time, we lived over 1200 miles apart, and my stepdad didn't let us know how bad it was getting. She lost her driver's license 8 years ago and is still going strong except for this dementia. Three years ago, we moved her and stepdad to be near us to help them. He died 6 months later, so now my sister and I care for her. This is more like a life sentence, and she will probably outlive me. When you Google vascular dementia it says the average life expectancy is 5 years. What a joke! I think it has so far been more like 10 years for my mom.
The move was hard on her but she adapted and is just great in her new place. She doesn't even remember the old place now. They adapt.
But...you need to find a way to get the finances away from him, he will ruin you financially.
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Reply to Debstarr53
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Mapotter Dec 31, 2021
Wow. I guess the 5 years is an average. My girlfriend only lived 4 years.
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