How do I deal with feeling overwhelmed?
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.
It sounds like he is in denial, and who can blame him, but some crisis will occur when he is confronted with his need for care. Prepare for this emotionally so you can stay calm and offer some alternatives when he calms down. Do not argue with him head on, although that doesn't sound like you,
but don't deny that you are concerned when you discuss it. Can any family member or friend provide support for you in this situation; you can't continue
to manage alone?
Our son will be 2 hours away after we move. He has two young children and a demanding job. I am not going to count on him to help much. I have asked him to go with us to the new house — like recently for the electrical walk through — and, as a few times before, something came up. I realized then that I am the only one I can count on. I am assuming things will get worse for my husband. Then maybe it will be an eye-opener for my son. For now, I will limit what I tell him so he can see for himself. Maybe then he will see that I wasn’t being negative… If I hadn’t taken care of my mom, I wouldn’t know what to expect. Anything can happen, though…. Dementia is not the same for everyone.
My husband has no family. He had 3 good friends. Two have passed away and one moved out of state. So, it will be all me, unless/until I employ help. Right now, I guess I will be happy that he can do for himself. I just have to keep a close eye on him.
I would still like to have a better diagnosis. He is on Aricept. The neurologist said there was a 50/50 chance it would work. At the last visit, she said she could try something else… Then I read where, for vascular dementia, those meds don’t work. So, why prescribe something when you don’t really know what you are treating? Seems like a waste of money, except, of course, for the Rx companies….
While I am smack in overwhelm and do not make light of it, I believe more than half of the country is, too. How to deal with it?
Likely it is different for everyone. Try a few different ways - perhaps on different days and see what might work - something that you could keep doing on a regular or irregular basis.
TIME OUTS: Give yourself a few 'time outs' during each day:
* Sitting still; meditating helps. It quiets the mind and the body.
* Focusing on your breath - try focusing on the in-between part between the 'in' and 'out' -
* Bring out the CDs and find a relaxing, calming song / piece of music that envelopes you or at least refocuses your attention for a few minutes. (These few minutes of whatever you do can be repeated for ... a few more and then a few more.)
* Burn off the overwhelm by exercising however you can, dance, ride a bike/exerciser bike, whatever you can do physically (I slow jog at 70, but not enough).
TAKE MORE CONTROL / A NEW + CHANGING SITUATION
* While this is a new situation for you and you want your husband to feel as best he can going through these changes (so you are sensitive to how and what you do) - you need to take control to insure that bills are paid and everything is getting done as it needs to.
- He may be upset or react in some ways, whether you 'help him / take over' or not. He is scared and frustrated. Inside him somewhere, he knows that you are doing what needs to be done, taking care of him, you / the household, even if he feels bad about it.
= Perhaps tell him you just want to 'look it over' - then pay the bills and put it away. He likely won't remember. If he does, tell him "I took care of it, its okay." Then change the subject quickly. Be prepared to change the subject.
* Change passwords on important documents, etc. Do not let him 'handle' these things because HE CANNOT. He may want to. No one easily gives up their independence, even if they can't do what they believe / know they 'should' be able to do and have been doing for decades/all their life.
* He may be following you out of fear or in his mind, think you are leaving (or both or something else). Have you tried saying "I'm going in the kitchen, (will) you sit here until I come back(?)" and see how he responds. He might 'stay put' if you ask / encourage him to do so, which is also addressing his underlying fears or disorientation.
- It might be possible to tell him that it makes you nervous when he follows you around and you'd feel better if he stays xxx. I don't know if he could understand this or if he would accept your request as a courtesy to you. You might have to try different words / communications and see what happens / what works.
GET SUPPORT
* Can you hire a kid in the neighborhood / college or high school (?) who could help you around the house ? or a caregiver?
* Certainly get someone to help you pack up for the move.
MD INPUT
* Personally / professionally, I believe the MD was trying to support you and didn't frame it in the best way possible - to support you. I believe what s/he was saying is that a change in the environment (layout) will be disorienting and take some adjusting. This is natural. Try to be patient and perhaps when you do move, get a caregiver immediately (as you can) to be with your husband to follow him / be with him around the house. This person could redirect him from following you with some encouraging or mild intervention.
I find that little moments of peace are better than no moments of peace. Even deciding to stop for 1-2-3 minutes will shift your focus / feelings / and you may relax or at least shift out of overwhelm. Then, when you actually do something (mentioned above exercises), you will feel better too.
If you have time, could you take a warm bath for relaxation. I'm thinking of something relaxing. Get yourself a massage, get your nails done.
Gena / Touch Matters
Because I live out of state I sent a letter to the neurologist’s office ahead of time, spelling out the timeline of all the symptoms my brother had. He and my niece were in the the examining room for less than ten minutes since the doctor had a good idea of the symptoms beforehand. He ordered an MRI, which revealed a massive brain tumor. No clock stuff. That may be easier. Be specific. For example my brother co-signed his daughter’s house and he had done repairs on it. Five months later he didn’t know where she lived.
Being a caregiver can be lonely when family members don’t help out and are clueless about the work involved. Or they criticize what you’re doing. It’s very frustrating so it’s important to get help elsewhere. I’ve always been independent and done stuff by myself but caregiving is not the time and place to do it. The Area Agency on Aging can help with where to find resources. A geriatric social worker can help too.
People that didn't know my dad well thought he was perfectly fine. It was frustrating because he didn't know, wouldn't acknowledge or ??? that he had any issues. It made helping him a huge challenge.
I pray that the move isn't overly detrimental to your husband, my dad wasn't bothered much by moves as long as he got to do mostly what he wanted. Which happened to be long drives, so it was fairly easy to placate him. I did notice that he did better with his stuff being around and his little dog was a ground for him.
Do what is best for you in the long run because his situation is only going to get worse, no matter what your address is.
I changed my dads phone number and put all of his bills to my email, that way I could do bank checks and anyone calling was looking for someone else. Maybe turning the ringer off would help some.
i know your message is for OP.
but i just learned some practical tips from you! :) :)
pre-new-year hug!! :) :)
You’re committed to the new house and move so you can’t change the complications with that. The neurologist is right, the move won’t be good for him. You saw his discomfort at your son’s house, so he is exhibiting signs of disorientation when he’s out of his comfort zone. The move will definitely ramp that up, sad to say.
I’m concerned about your son’s reaction to the doctor’s opinion about the move. Is your son aware of what you live with every day? Sometimes family members are in denial about their loved one’s deterioration. I hope he can be involved with the move and witness your husband’s behavior during this time. Hopefully moving closer to family will bring more support for you.
Simplify your communication as much as possible. Teepa Snow has YouTube videos that will really help that so you get cooperation and preserve your sanity. She’s practically a dementia person whisperer!
Music has made a huge difference for my brother. He really resisted taking showers, but finally did when the hospice nurse played Aerosmith. We’ve noticed it increases his cooperation overall. There are videos of people with late stage dementia in facilities who start singing and speaking after hearing music from their generation. Maybe this will help.
The above stuff has been ways hopefully to make your life with your husband easier. That will help. But you need help as well! Take those trips to the grocery store as well as walks! Find a caregivers group locally or online—the Alzheimers Association lists local groups. At some point hire a home caregiver for a short while—an afternoon or two a week maybe. You will require respite for yourself to keep the level of overwhelm to a minimum. A counselor/therapist who works with caregivers and issues of aging can help. It’s hard to think straight when you’re overwhelmed. Good luck!
My son is definitely in denial. I think he sees me as a negative person. I think I am a realist, and try to figure out what is going on. I like to know and understand what I can expect.
When we move, will have to get another neurologist for sure.
The first doctor that our Internist recommended, never got back to us. It was around the time of the pandemic. So, we went to this other one, also recommended by our Internist. I sense my husband thinks she is having him do “stupid” stuff. Or maybe he thinks she doesn’t know what she is doing. He can be pretty arrogant. My husband is familiar with a lot in the medical field from his profession, so I am not sure how much he trusts what she says. She did do the standard test — remember 5 things, draw a clock, etc. But, she said she cannot diagnose dementia, only MCI. He would have to participate in more extensive testing at a dementia clinic. But, he refuses. Are there other neurologists who can diagnose dementia based on symptoms?? Is that what we should look for? At the first visit, the doctor said she had to keep an eye on him, so she has us come back every 6 months. She said what he has will eventually lead to dementia. But, how will she know if she can’t diagnose it??
One thing the neurologist said was that intelligent people (like she says my husband is because of his level of education 🤷♀️) tend to score higher on the tests than they really are. So, there is that.
At our first visit, the neurologist referred me to the Alzheimer’s Assoc. I have been on their site. But, I find this online group more helpful.
I am anxious to see what the neurologist says next week. But, with the pandemic heating up again, we may end up doing a tele-health visit….
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.
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.
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.
The SSRI naturally blocks the stress hormones from robbing your body of the serratonin that the body naturally uses for stress. Your body has used all it has, and that's why you are at a loss. My doctor told me that it's common for those who are caring for others. My dad would get weepy and of course, added to my guilt. I asked his doctor if it would be ok to put my dad on them, and it made a world of difference!
Normally I'm not one to suggest medication, but in this case, it was a lifesaver for both of us.
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
Oh, and my husband wanted to move 4 hours south of here.....I almost went along with it-but, all of his specialists are here and that is so important. I honestly do not know how you are managing a move, probable dementia in your husband and caregiving. That is a lot. Please get some respite care, does wonders!
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.
Did your husband go to the later stages fast? Was it a result of a stroke or high BP?
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.
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.
Ivery gone down the vascular dementia road with my mom. Everything is fine but then there seems to be drop off. One month we were reminiscing about my dad who passed 15 years ago, the next she was worried because he hadn't come back from work yet. Any stressor, such as a fall, or even this move could precipice a change.
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.
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….
Yes, moving will be hard. Change is hard for folks with dementia if any sort. The doc didn't tell you NOT to move; she pointed that it would be hard on her patient, your husband.
If the neuro can't diagnose dementia, ask who can. A neuropsych exam might be useful, as it will clarify where your dh's skills are right now.
As I mentioned, the neuro is dh's doc. Who is YOUR support sysyem? Have you considered talking to a social worker or other mental health professional about these issues ?
(((((Hugs))))))
I want to highly recommend a Louise Penny book "The Madness of Crowds" to you. It's got some relevant themes about guilt, dementia and honest reflection.