Can he or can't he?
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!
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.
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.
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.
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.
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.
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.
SIL has moved away and washed her hands of her mother. I still see MIL and we have remained friendly, even if she can't recall when I was there last. She has dementia [unspecified] and some other health issues.
Threats don't work with my husband. He is a war veteran and doesn't take kindly to threats.
I think this may help with an answer...SunnyGirl1 sent me a link to an article on Loss of Initiative.
I have to keep in mind that my husband has dementia, frontal lobe damage from a stroke, PTSD, and severe depression all wrapped up in a man package....
~~~~Getting out of bed and starting the day, or going out with friends for coffee requires motivation. While the person you care for may appear “lazy” or “apathetic” to others, remember that they have suffered damage to specific parts of the brain which has resulted in this change. That is why they cannot simply be “talked into” showing interest, although they can be prompted to do specific tasks. ~~~~~~
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.
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.
Apparently that didn't work either.
I'm sure all the blood tests come back normal for your DH...? And so this lack of motivation is just attributed to mental causes or brain damage of some kind.
My dad was very much this way. He could do for himself but largely wouldn't do for himself. I learned to structure everything so that he HAD TO DO for himself. Survival is a great motivator.
What about trying those big soda cans of energy drinks for your DH? They have sugar free versions, too, but unless he has a sugar problem, I'd give him the full strength stuff and see if it kicks him into a temporary "high" where maybe he'd feel a little better each day, have more energy. I'm wondering if he would benefit from a temporary kick from a lot of sugar, caffeine, and other dopamine boosters and stimulants.
I think his mind is trapped in dementia and depression and only if he can make his own break through we are just going to be on the sidelines.
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!
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.
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. 💐
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.
Dr Coppertino
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.
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.
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.
His cycle of meds are usually good for 3 to 6 yrs and then they seem to stop working.
I think being in a ward would be helpful. He would HAVE to make an effort to get better in order to come home.
That is not exactly the best scenario, but it has worked in the past.
That whole combination of issues is such a mess!!! Dealing with one issue may possibly even make another worse! Dementia alone is bad enough, and even that does not have a single path everyone follows.
Given that 1) not all dementia/mental issues are the same and 2) that you indicated how well things went when you had the "Not-Family" there, then your comment saying "My husband keeps thinking he doesn't need outside help, but he actually reacts better to other professionals." would be the best option to explore. Bringing in help from outside, especially if Medicare/Medicaid/VA will pay for this help (all three do provide some limited assistance, based on need, perhaps some help from each will provide a lot of help for you!), will help YOU. More than likely, unless something gets 'better' for him, or some medication brings back some of the old him, his situation will not improve. Meanwhile, you will run yourself into the ground, then where will the farm and those poor beasties be?
Bring in outside assistance, keep those fruits and veggies on hand/available, and resist as best possible responding to his needs or demands for as long as you can (oops, sorry have to feed the cows/horses, oops have to collect the harvest, oops, too busy, will get back to you later!) He obviously could pick up the fruit (or cookies) and eat them. So it isn't a balanced meal, he DID it himself!
If he maintains that he cannot get up or do anything, how will he stop you from bringing ANYONE in? As others noted, sometimes those aides can really make a difference (as he responds to the docs and OT/PT staff, so he just might with aides coming into the home, even with showering - don't expect daily, but if he agrees to that, all the better!)
Keep us posted as to how things progress...
(P.S. bring in your own visitors too, friends, family, neighbors, other farmers, just to keep yourself socially engaged. He can choose to join or ignore - you need to mix with others who are still "whole".)
Hubby engaged very well with the guests. And he also immediately had issues...so it is hard to tell if it is depression and dementia or if he wants attention...but he has never been like this.
However... I have decided to not let him run things unless he gets his butt out of bed.
Sounds cruel, but I have animals to feed and to sell and to train and sell...
I can keep track of him now fairly easily.
I see how outside help has helped with his mom, so...