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My DH has entered a new phase with caregiving. He refuses to do anything. He has decided that he can lay in bed and not go anywhere or interact with anyone other than me.


When he goes to his VA appointments [I drive him] he is pleasant and interacts nicely with the OT/PT people, the doctors, and is able to walk from one end of the VA facility to the other.


OT ... PT and his doctor tell him, to assist with your depression you need to be more active, you need to move and try to do things. He agrees.


Medical history for hubby: PTSD, Hypertension, Throat Cancer[past], COPD, PVC [premature ventricular contractions of the heart], Vascular Dementia, and the big killer, Major Depressive Disorder [depression has been a constant battle to fight with for over 20 yrs.]


We have med changes occurring soon for the MDD and Vascular Dementia.


When at home, He Can't Come Out of the House. Period.


Each day I've tried something different.


"I need you to move your mother's car so I can mow around it." Nope. Can't walk to it.


"Can you call the repair shop to make an appointment for your truck?" He pushes the piece of paper to the side and ignores it.


"Today would be a good day for a shower!" Nope. Too tired, too shaky, or don't need one.


He is super apathetic all day long.


He gets up off and on during the day and when he hears me in the house [I have a small farm and many responsibilities to care for outside, but check in often]...He asks me to make him something to eat.


Yesterday I had enough. The sandwich meat was there, the bread was there, everything was handy. I was processing green beans and sweet corn from the garden and doing some other work.


I told him to make his own lunch [he ate some crackers and chips instead], when supper time came he whined that he didn't like what we had so I put it away and said 'Make your own.'


[I think he ate crackers ~ bad me!]


I got to the breaking point and told him I was going to go for a walk. I wanted to yell and scream at him to get his butt moving and at least make an effort to move, to go outside...anything!


He is capable of moving, and of doing. He has decided that at home he cannot. I tell him he will just get weaker and he promised the doctors and physical therapy that he would move.


He is up most of the afternoon and evening and by bed time he is quite animated and talkative which is nice.


I am exhausted from farm work and caregiving all day.


He then gets it in his head to 'get intimate', then angry because I am not in the mood.


He has been evaluated for Dementia, for movement, for driving, for depression, and for all of his physical issues. He is not in that bad of shape.


So Can He or Can't He really get out and about? Could he really move outside and help?


No real answers.


So I just go day by day and get frustrated one day, angry, resentful, then hopeful and kind full of being sweet and nice...the nice wife.


Pfft!

I would totally ignore his decision to be anti-social. Have yourself anyone you want over - he can retreat to his bed if he wants. It's at least half your house too.

Have you read the book Boundaries by Cloud and Townsend (website by the same name, too)? It's really great for finding strategies for you to set a boundary and live by it. For example, you not making him food was great. You know he's capable, and you know you want to see that he moves around. You essentially gave him a task you knew would force him to move. You held your ground when he whined. Way to go!!

Now you get to clean up the foods in the house so there's no junk. That way if he wants junk, he has to do something significant to get it.
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Val3rie Aug 3, 2018
That crossed my mind last night when he started rummaging around for seconds and he'd eaten a full plate.

I feel like I am overseeing a child. It is interesting and frustrating to see the progression backwards.

I purchase only one small container of store cookies and when they are gone there are none until I go to town again. He will choose fresh fruits if there is no junk food. So I keep fruits available all of the time.

I haven't read that book, but will look into it...and the website. Anything to help me survive this next phase in my life.
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Val3rie You are very well informed about your husband’s condition. As you know, there won’t be a magic pill that’s going to make everything better. You’ve tried various methods to motivate him, but nothing helps. Hopefully, a change in medication may produce better results. You need to remain cautiously hopeful and make each day a good one for yourself. It’s hard but keep the focus on “you” and things that bring you some joy. Coping with someone who has brain damage and some dementia is very difficult, and there are no easy answers or cures. Take one day at a time. You are doing the best you can.
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I'm glad the article on Loss of Initiative was helpful. Reading things like that helped me. I might discuss it with his doctor too. Some doctors, sadly to say, are not familiar with dementia progression. It's shocking how much some doctors aren't aware of regarding dementia.

When, my LO first got dementia, I was totally confused and perplexed as to why she acted in certain ways. I tried to help her, but, she seemed so resistant. I offered her so much, but, she refused. I asked very little, but, she would't budge. It wasn't until later, when I started learning about how dementia works, that I realized that she wasn't being lazy, mean or ungrateful on purpose, but, the brain damage was causing it. Then, it made sense. I was able to see how that was true. It's just how brain damage works. The patient is often resistant to care and the help you offer. I found that I had to not take it personally and figure out a way to deal with her. In order to get her the care that she needed, I had to place her in Memory Care.


You sound like a very devoted wife. Take care of yourself, too.
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Val3rie Aug 4, 2018
It really helps to think of things this way...except when I don't, which happens of course.
Like nagging him, bribes, and everything I can think of to have him shower!

It isn't funny but sometimes I have to smile inside and remind myself that if I start a day or two early, I can usually get him to get the idea of showering into his head.

Thank you again.
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Val3rie, I feel for you! My mother is similar. She’s bright and animated when I take her out for doctor appointments and the like (although she never initiates conversations). She had a broken ankle last year and after 8 weeks of rehab she was sent home in a wheelchair. At the doctor and at physical therapy she’ll practice walking and even tell the nurses and doctors she can’t wait to get back on her feet. But at home she refuses to use her walker and says she doesn’t feel well enough to do anything. I’m just telling you this because I think for some people this goes right along with the dementia, and to say I understand how very frustrated you must feel. I think my dad went through similar things with her as you’re going through with your DH. My only advice is to take your DH. to counseling (if he’ll go) and if he won’t go, just go yourself. You deserve to feel supported in your caregiving role. Best of luck and hang in there.
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Val3rie Aug 7, 2018
He had once a week counseling set up and told her he had no Hope so he didn't want to come back.
However we shall see when we go next week. I made the appointment and will take him because there is a chance for a bit of help from her.
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Val3rie, call the VA and ask to talk to a Social Worker. Ask about the Caregiver Support Group. The one I go to is great and there are other caregivers that will help you as well.
What you are describing 2 or 3 of my group members had many of the very same issues and their husbands had PTSD as well.
There is also a Caregiver course that my group was offered and it helped a lot.
The VA also has Homemaker Service that you can get, someone will come in and help with the shower, they will do some light housework and be with him while you do what you need to do. It is possible that since he is 100% "service connected disability" that you can get more hours that what I was able to get. And trust me the aids that come in can almost always get someone to shower when all else fails.
Depression is one thing, apathy is another and if you wrap that with the PTSD it can be very difficult.
Again contact a Social Worker and ask about the support group in your area.
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Val3rie Aug 7, 2018
The caregiver support group meets at the VA, one is 89 miles from home, the other is 68 miles from home. I could meet with some folks 45 miles from here too.
I can say that the groups won't work well, however I think I will call the Social Worker at the VA and ask her about some Home Services.
My husband keeps thinking he doesn't need outside help, but he actually reacts better to other professionals.
Very helpful, thank you.
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Val3rie, this must be so frustrating for you. As well as exhausting and sad. I have not had a DH with the conditions that you describe, but, a family member with dementia and some other health issues, that I am responsible for. The stress is out the roof and the worry......it seems too much at times. Do you have someone to help support you? It's tough to do alone. This site is a good place for support though. There are many good people here with lots of information and kindness.

You say that your DH has had tests. One thing about testing for cognition and dementia, is that their abilities may be greater on one day than the other, so, the test results may not be that on point. And, the dementia patient often provides untrue answers to a test giver and it can skew the test results. I'd keep in mind that he may more impacted by his cognition limits than you suspect.

While we have our own idea of what a person can or should do, the person who has brain change, may not share our vision. Is DH's doctor very familiar with dementia and it's progression? I'd discuss it with him and do my own research on Loss of Initiative. Loss of initiative is quite common with dementia. My LO had this and it frustrated me to no end, but, once I realized what was happening, it helped me accept it. I learned that just because my LO was capable of making herself a snack, her brain was not allowing it. Her hands moved, but, her brain prevented her from pushing a call button or making a sandwich.

I'm going to PM you a link about it.

I'd try to learn what to expect with regard to progression, so you aren't constantly disappointed.
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Val3rie Aug 2, 2018
I understand that he is going through a period of apathy. He could care less about so many things but then just tells me he is tired.
He is a veteran so his VA doctors change often, the one he has now gave him a pep talk. Told him that he was doing well, not dying at all.
He is so focused on finding that magic pill now that he is determined to lay in bed until the magic pill comes along.

I get it. I just see insights where he engages and interacts with others. I've tried having people come to visit and unless they just barge in, he tells me NO visitors.
He won't get away with that as my Not-Family Family is coming next weekend to spend a couple of days.
I wish his daughter would come and offer to spend a day or two with him too. Alas, she is too busy.
I do understand that the stroke did affect the frontal lobe so this does make sense.
His speech and critical thinking were affected. His personality did change from the veteran with angst and quick to anger to one who is mostly emotionally flat.
Perhaps in my mind I am fighting for a bit of spark from him.
I'm okay with knowing that this may be as good as it gets. However I always believe in hope, you know?

I am alone in this as his daughter is not helpful, although I am going to ask her to spend a couple of days with her dad so I can get a break. [They are dropping their daughter off with me for 9 days later this month so THEY can get a break from the daughter...it's okay, I get along with her...]

My MIL has Alzheimer's and stage 4 kidney failure. I have been juggling her care too. However since my DH was the DPOA and now can't be one, a guardian will be appointed by the court in about a week.
So that will lessen the stress of me handling two 'patients' at once and all of those responsibilities.

I am taking time for me today by going out into the woods and going hiking for a couple of hours.
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You've had many good answers.

I am going to chime in here to say my mother (NPH dementia) also has problems with initiative. In fact I think it was one of her first symptoms. She was always a great cook, creating a variety of different foods. But she stopped cooking much. She lived in a MIL apartment that is part of my house, and would start wandering in around dinner time to see if I had any leftovers she could use.

As things got worse, we started having a caregiver come in to help with shopping/laundry and cooking a couple times a week. She would create a delicious dinner, but unless it was sitting right in front in the refrigerator, Mom didn't think of it and didn't think of looking for it.

Now Mom is in AL. She, who always dressed well, will just pick up whatever outfit has been left on top of her dresser by laundry and wear that. We will go out to eat and bring home leftovers and put them in the frig, and they are never eaten. Fortunately she is regular about going down to the dining room for meals. But even there she just gets whatever the main item on the menu is for that day - even though they have lots of options. But deciding and choosing seem to be beyond her much of the time. She can do it, but it takes one of us kids there with her to prompt her.

Best wishes with your husband!
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Val3rie Aug 7, 2018
Thank you!
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You are me, my dear, in many ways. For 15 years, since a not-all-that-serious stroke, I have been in varying stages of caregiving for my 68 year old husband. Now, he is bedridden. He’s had several hospitalizations, scores of in and out patient therapies, scads of scans and tests and no doctor or neurologist has ever been able to find anything wrong with him. When one specialist got close we never followed up because, well, it was my responsibility to put together the appointments and I didn’t. So he just accepted it. He is incontinent both ways, totally immobile and I do everything for him but feed him. I’ve taken it upon myself to get lifts and medical equipment for him. The last time I tried to get him in the car, he froze up. We will need to get a doctor to make house calls because I can no longer fight with him to try to get him in and out of the car. Right now, he’s whining because he wants me to get up and get him a bag of pretzels. I used to feel bad for him, but no longer.

You really should have a private sit down with his doctors and tell them what he’s like. They may ask if he would see a therapist. Or they might adjust his meds. Or suggest that you see a therapist. Asking for help is ok, too. If he has friends who could come and visit, or family close by. Anything to take the weight off your shoulders.

I wish us both some peace and at least a little happiness somewhere along the line. Come back often and let us know how you are.
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Val3rie Aug 2, 2018
I have had a talk with the doctors and he is supposed to see a therapist weekly. He told her she couldn't help him and he couldn't do 'things' because he just couldn't.
The doctors all feel like he'd improve if he made the effort and he doesn't want to make any effort ... it seems.
However is this is a progression and the way things will proceed then I need to figure out how to help myself too so that I don't get worn out.
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val3rie and all, what a good thread - and teary. I often walk around thinking the memory problems (or the paranoia in my mom’s case) are the worst issue but I think this is the one that breaks my heart more. Mom wants only the people and activities that are no longer within her reach, and can’t seem to adjust to what she could be doing.. so does almost nothing.
I like the answer about ‘survival as motivator’ thing, I hope you can implement this in some useful ways. I know it is bittersweet for you but at least he’s not experiencing that anger and anxiety now.
I also agree with: people, help, etc., get as many darn people coming to the house as you need to work through your day-to-day. Maybe some help with your outdoor chores too. It sounds like good therapy :) but maybe just a little load off so you’re not so exhausted.
Sending you many well wishes. 💐
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Val3rie Aug 7, 2018
Absolutely, I do have my gang showing up this weekend. The younger man likes to ask hubby what needs to get done and can usually get some response from him. The last time he was here, he got hubby to come out and 'tell' him how to change the oil in the diesel truck.
The kids engaged my husband every chance they got and when hubby was tired, he just went to bed.
It was so good to have them here and the extra helping hands with meals and chores were great, not to mention all the fun we had.
All the time trying to engage my husband.
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Where's the mental health person/psychiatrist/pill prescriber in all of this? IF he is truly capable of doing things, then you are enabling by doing it all. At the same time you have to wonder...at the very least, if you have meals on wheels in your area, I'd give it a thought...at least then you don't have to do a midday meal for him. Not that this could be it...but I had a friend whose husband was similarly reclusive except for managing errands for what HE wanted when HE wanted. Over time he developed additional symptoms and wound up hospitalized when he went down and she couldn't pick him up. From her own reading and research she was the one who brought up Lewy Body Dementia...and ultimately the medical folks agreed.
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Val3rie Aug 7, 2018
Have you ever worked with the VA system? The mental health people are excellent and hard to get to see. The psychiatrist was sharp enough [3rd rotating doctor we've had in the past 5 years] to order a neuro pysch evaluation which found both the Vascular Dementia, evidence of more strokes and brain damage...and Major Depressive Disorder. With those combinations it is hard to separate what my husband can actually do and what he thinks he can/can't do.

IF I don't feed the cattle and water them, they will not be fed and watered. I don't wait on him much but do watch over him. If I don't take care of our equine, they too would be starved and ignored.
He simply doesn't go out.

I thought if I insisted on him taking care of things, he would if I let them slide.
That only led to disaster. So I am taking charge and told him unless he participates, he has no say in what I do on the farm.
Harsh, but there it is.
Perhaps he truly is not capable.
And we are dealing with brain damage AND dementia. Not a good combination.
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