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Rick is not accepting the changes in his ability to tackle projects and participate in certain activities- such as driving. He has been more aggressive & combative- insisting that he takes on challenges which are no longer safe for him. I would love some insight as to how to most effectively handle these challenges. His stubbornness has put a strain on our relationship.

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I always contribute from the patients perspective. I was diagnosed with early onset ALZ four years ago, a month before my 57th birthday, I had to driving the driving discussion with my Neuro Dr. the day I was diagnosed with all of the test results in. We agreed we'd continue the conversation at each of my appointments she'd evaluate whether I was still safe to drive.

In January of 2020 my appointment still cleared me for driving. The first Saturday in March, I told my DW I was hanging up the keys, knowing it was going to increase the load on my DW. I told her I'd continue to do all of the things . I have been doing to help out like our laundry, vacuuming, cleaning the bathrooms, when she returns from shopping, I meet her in the garage and we wipe down all of the groceries with Clorox wipes. I'll also cook if I am not alone our youngest is 13 and quite the cook and baker, so as long as she or one of our adult children are in the house, I'll do some simple cooking hot dogs, burgers, past, make salads. These are many of the things we, meaning, the patients can do to lighten the load on our Dear Caregivers. We agreed at the beginning of this journey if I was doing something that wasn't safe, whether it is my DW or children, they are to tell me if I am doing something that isn't safe, and I stop and turn it over to whoever is available. No arguments, however I do draw the line when we are out and paying for a service, and the service is lousy, and nothing is being done to correct the problem, I don't hold back, I've been known to be occasionally disputatious. HA!!!

My recommendation is when our Loved Ones and we patients receive our diagnosis, I learned from this Forum, address the issue of driving up front, discuss things that our Loved One can do to contribute to the household, which will bolster self image of being able to contribute. what plans they'd like to make regarding future Memory Care, Estate Planning, Medical Directives and divest ones self from managing money. There can be severe consequences from continuing to drive, leaving the stove on, I've done that, sending out checks in the wrong envelopes to our creditors. Done that. I've turned the bills and money management over to my DW, and one of our Adult Children who is finishing up his Degree in Finance, and Accounting. I am allowed to keep 300.00 a month from my SS disability and when I want to buy something, someone will take me to the bank to get some spending money. That allows me to be involved with and have some interaction with others. I also continue to Usher at Mass each week, and meet a friend once a week to discuss Politics and Religion over breakfast or lunch, I also volunteer to wash dishes at our Senior Luncheon at Church and at my Knights of Columbus Council. I've told friends at these functions about my diagnosis, and they are not afraid to tell me I'm not doing something I should be doing, or repeating myself. I know I am on the horizon of having to pare back some of my activities, and I've told my friends, they are welcome to tell me if they think I am out of my depth.

Caregivers, speak up and have these conversations as soon as you have answers in your hands. Those that are young, make financial plans, discuss how you'd like medical decisions to be made, and be frank about your wishes. This will all help lighten the load on our families. Pray for your families, friends and community.

John
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MargaretMcKen Nov 2020
John, this is the most inspiring post. I'm sure that it can't be easy for you and others, but this is the most helpful approach I have ever read. Well done!
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I think it would be hard for any of us to come to the realization that we can no longer do the things we used to. And the fact that he is angry is quite normal under the circumstances. Please remember that we tend to take out our frustrations on those we love most, so in your case that means you get the brunt of his frustrations.

When my husband had his massive stroke at the young age of 48, and lost his ability to walk, talk, read and write, you better believe that he was mad as hell, and ended up with depression, and at one point was actually suicidal. He eventually did learn how to walk again with a brace and cane, and his speech came back in the form of a few words and short sentences. During that whole time, I just tried to remain patient, and let him know that I was there for him, and wasn't going anywhere.

As time went by my husband faced many, many more challenges, including seizures, several surgeries, and then eventually developing vascular dementia, and aspiration pneumonia, where he almost died. Believe it or not, it was his stubbornness that actually got him through everything that he had been through. Something that over time I learned to admire about him.

So I guess I will say to you, to just be patient with him and love him, and make sure you are taking care of yourself, and getting some breaks from your husband. And remember that as our LO's decline they do tend to mirror our attitudes as well, so it's important that you stay positive and calm, so your husband will do the same. Now I'm not saying that any of this is easy, but it will make your life a little easier if you can just remember that his anger is not about you, but the changes that he is going through. I'm sure he's scared. You would be too.

And if things get to be just too much for you to handle, of course you have the option of placing him in a facility. Unfortunately there are no easy answers. Being a caregiver is hard. No if ands or buts about it. But remember that life is short, and this too shall pass, one way or another. So again I will say, love your husband to the best of your ability and be patient with him, and try to enjoy whatever time you have left with him. My husband died 7 weeks ago today, and I would give anything to just have one more hug from him. God bless you.
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sjplegacy Nov 2020
Funky, there are so many people on this forum that it's difficult to know all their stories. Thanks for telling yours. I hope it brings some comfort to Lyndylou.

I am so sorry for your recent loss of Larry. You will be rewarded for the many years of caring, compassion and love you gave him. I, too, would give anything to have one more hug.
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I know exactly how your husband feels. He is angry, ashamed, most likely in pain, etc. and he is lashing out. I would medically do all I could, like a calming drug, whatever is possible. I would also try to sit him down and explain how it is affecting you, etc. I doubt this will make any difference but you need to try. And here is the main thing - if his behavior is causing great harm to you, you need to decide if you are going to allow it. Can you get a caretaker? Get some relief? If nothing works and it is only getting worse, YOU have to decide if you want a normal life and have peace, which you deserve, and if you agree you do, you must eventually remove him from your presence and place him. I don't care why dementia people do what they do - it is unacceptable. We who remain and are the caretakers can deal with just so much. When it gets to a certain point, we must remove them. Only a few people here and there can just ignore these outbursts and deal with them. Most can't and won't - as it should be.
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My husband had similar aging difficulties, with the addition of having a mild stroke. I talked to his doctor, who prescribed a mild sedative that he takes before bed. It has made a huge difference in his attitude and how he handles frustrations.
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Grandma1954 Nov 2020
Lyndylou's husband has to be careful with the medications he has Parkinson's and possibly Lewy Body Dementia (very common with Parkinson's) many of the "normal" medications that are prescribed can be harmful if not fatal to those with LBD
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If you haven't had him checked for dementia/Alzheimers, please do. It took us 4 years to have my husbands dementia confirmed. His poor driving was a clue, and had to stop driving over 2 years ago. His anger about not being able to drive was overwhelming to him and he took his anger out on me, saying it was all my fault. I recently had to put him in a memory care facility, and he still occasionally blames me for his condition. Yet other times, he forgets about driving. Hardly anyone would believe me about his condition until they actually rode in the car with him. Sadly, all these years, I had to fight this situation all by myself with very little support. I advise you to forget about others and what they say or think, and do what's necessary to protect yourself, your husband, and the community's risk if and when he drives. Good luck.
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My heart goes out to you, as I am caring for my husband, who has Alzheimer. Yes, there will be good days and some very bad days, and all I can say is cherish the good days or moments and remember them when your loved one is lashing out in anger. You are the one that is there for them 24/7 so that makes you their rock to lean on, but also the one that will bear the brunt of their anger and fear on the bad days. I too want to love and care for my husband as long as humanly possible, but know I need to take care of myself and take small breaks/down time, so I can continue to be there for him. My heart goes out to anyone caring for a relative or loved one, you are all my heroes and I applaud you for what often is a thankless job. Take time for yourself, take care of yourself and know you are doing the best you can.
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Can you get one of his doctors to explain to him that with the medication for Dementia or the medication for Parkinson's that he can not drive.
Also discuss with the doctor the increased agitation and aggressiveness that he is experiencing. If he is on medication for depression and or anxiety it might be time to have the doctor review them and see if an adjustment should be made either in dose or medication.
Can you give him other tasks that he can take on a bit easier?
*Is there a piece of furniture that you want refinished? (or that you don't care about) Let him start to sand it. If that goes well how about staining it or painting it.
*Are there boxes in the attic or basement that need to be gone through? Great time to do so now.
*Planting fall bulbs for spring flowers.
*Is there an Adult Day Care that is open where you are? Is he a candidate for that?
If the Dementia that he has is Lewy Body Dementia aggression can be part of it and it can be potentially dangerous for you so please take care of yourself.
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If his anger and bitterness is caused by Alzheimer's there's not much you can do. Hide things. Lie a lot. My husband has denied his disabilities since day one and is still denying at stage six. Eventually he stopped but he still sees himself capable of doing things. He just doesn't try any more.
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First of all, I just read your profile and would like to express my deep sorrow for your situation.

While I do not have any experience with any form of dementia during my caregiving days, I do have experience with Parkinson’s disease.

My mom has Parkinson’s disease. So, I can empathize with you. Parkinson’s disease is dreadful.

You certainly have your hands full. It’s hard to be a caregiver. No one is ever truly prepared for a caregiver role.

Of course your husband’s driving days are over. You know this. It isn’t safe for him or others on the road. It has to be so frustrating for you that he isn’t accepting his fate.

Dementia is complicating things further. He may no longer have the ability to reason about serious issues.

Have you told his doctor about his aggressive and stubborn behavior? If so, what feedback have you received?

Do you get a break? Too much togetherness can wear on anyone in any circumstances.

There are many on this forum that have experience with dementia and they will help you.

Wishing you and your husband all the best during this very challenging situation.
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My mom was very reluctant to give up driving, but Alzheimer's required that. I took her everywhere she wanted or needed to go: shopping, to doctors' visits, etc. I emailed her doctor, so the doctor was the "heavy" and told my mom that she needed to give up driving. I tried to "tucker" my mom out during the day: we'd walk in the neighborhood and I'd drive her to the store, just to get both of us out of the house, and I'd get something that I really didn't need, like a roll of paper towels. (How ironic, that when store shelves were empty more recently due to Covid-19, I really could have used some extra paper towels.)
We were lucky in that my mom's car stopped working. Karma took over Ma's car.
In fact, in a book I wrote about taking care of her, I have a chapter entitled, "Karma, I mean Car-Ma." I wonder if the facility where your husband is could find activities for him to do, so he'd be occupied, and forget about driving. Maybe he could write down some recollections about his life, and then you could publish it, either with a print on demand publishing company or just by stapling pages together, or maybe he could dictate this into a tape recorder. It would keep his mind going, even if his recollections might not be 100% accurate, (as was the case with my mom). She'd tell me stories that I know were made up, but, that was fine. I had to "steer" her away from thoughts of a steering wheel.
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