What strategies help you cope with behavioral changes in loved one?

Hi @lorrie2772 My name is Scott and welcome to Mayo Connect. I was my wife's caregiver during her 14+ year war with brain cancer, which gave her a multitude of symptoms similar to dementia patients. I'm happy to share some of my experiences in the hopes they might be of help to you, but I also understand each patient, their disease, and their caregiver's journey are unique.

While I have no magic suggestions, I will share one thing that worked for me. It was to look at caregiving one day at a time. My wife's behavior often changed by the day or during the day so this gave me the strength to think I only had to make it through one day -- and then know the next might well be far different.

I also kept telling myself her outbursts, anger, acting out, etc. were the disease speaking and not the woman I loved. For me, realizing it was something occurring beyond her control helped me cope with them and also to grow some thicker skin so I could begin to ignore the hurt a bit more each day.

Lastly, I will say be kind to yourself and know perfection is unable to be achieved in caregiving. We can only do what we can and the best we can. I like to say you will find superheroes in the comics, but Superman and Wonder Woman were not caregivers!

Please feel free to ask me any questions you might have.

Strength, Courage, & Peace

Thank you very much for the suggestions. It is nice to have someone that understands.

Hi @lorrie272, My husband has moderate Alzheimer's Disease. He was diagnosed in 2019, but I noticed changes in him a couple of years earlier. I sometimes go down a depressing road when I compare the changes in him, from who he was in the past to who he is now. It's better to live in the moment, as @IndianaScott suggested.
Last week I was frustrated and angry because my husband discontinued Physical Therapy, post surgery about seven months, for a broken hip. He was belligerent to the therapist, a very nice guy, who was trying to get him to do stretches. My husband was so elated when he fired the PT that I came round to thinking he felt empowered when he took action to leave PT. He has so little control of his life now and is so dependent on me that it must scare him. Long story short, at home, he'll do the stretches if I ask him, with some coaxing.
Luckily, he goes to bed early and sleeps well so I can relax at night and have some time to myself.
One nugget I picked up from somewhere, that I keep reminding myself, is never argue with someone with Alzheimer's Disease. If my husband gets adamant or angry about something, I let it go or move on to the next thing. The doctor told us to shorten his shoelaces so he wouldn't trip, and he became very angry with me when I tried to correct how he was tying them. Later that night, I shortened the shoelaces in a way he hasn't noticed, so that problem is solved.
Wishing you and your wife the best. You will always find a sympathetic ear here.

Thank you for the encouraging words. It’s hard to stay in the moment. I find myself looking too far into future. It is terrifying.

Yes, it is terriffying, especially in the beginning of this journey into the unknown. Does living in the moment mean don't plan for the future?
We're pretty much on our own here, and at this stage, I don't know how my husbands's disease will progress. Will I be able to care for him at home or will he need long term care in a residential facility? A couple of months ago, I was seriously considering moving to a senior housing type of place with easier access to healthcare for serious conditions, which I worry we'll develop in the future. I read some comments here by women who said their husbands got much worse when they moved. My husband loves our home and feels comfortable in the neighborhood, so maybe moving isn't such a great idea. What I can do now is get rid of stuff we've accumulated over the years so any future move, if necessary, will be easier. But I panic sometimes at night, overwhelmed by the thought of decluttering!

Hi Teri, I’m new on here too and my name is Janet. I can relate to all you have said and we have just made the move from North Carolina to Illinois. My husband Will has heart issues and Dementia that are getting worse so we needed to come back to be with families and friends for support. We didn’t move large or heavy furniture. Rather, we are buying furniture here. We did declutter by donating to Good Will, having an Estate sale (2 days) and finally a “clean out” for the items we didn’t sell. The move was very difficult for us to make as we are in our 80’s. We are finishing up this week when we get our POD delivered. Fortunately Will likes the apartment we moved into in our former neighborhood so this was a good move for us. He is very familiar getting around and not getting confused.
I am trying to keep Will at home with me, instead of a Memory Home, because right now he is still aware of where we are and who I am, and he would feel abandoned if I left him anywhere.
I need to find a social worker who can help us on this journey. You are not alone, we are here whenever you need help and encouragement. I have learned so much reading the advice and suggestions about Dementia. Let’s keep in touch!

You just said a mouthful! It is so easy for me to argue with him because he can get very mean and almost to the point of being combative
Instead of insisting he make a right hand turn at the stoplight, I should not say anything and let him make the wrong turn and help him figure out what happened (if he asks for help). He is very sensitive about his Dementia and is always losing things. He lost thousands of dollars in cash somewhere in our apartment, and haven’t found it after 3 days of hunting. I should have put the cash in our bank right away. My fault too!
So much to learn about Dementia and how it affects everyone he comes in contact with, in person or on the phone.
I am getting a social worker to help us on this journey. I admit we need help.

Beautifully said, Scott. Thank you.

/LarryG

I'm really glad your move went well, @janet7. How long did it take you to make your move, all things considered? That's a nice photo of you and your husband. I especially like his Aloha shirt.

Hi, absolutely I want to plan for the future. What I don't want to do is live my life today as if the future is here. I, too, have fear of what will happen. How long will we be able to live in our home? Right now I am still working. How long will I be able to work. She is in the very early stages and is still independent most of the time. I have thought about moving or at least looking into care facilities that provide step-down services. It is totally overwhelming that's why I can't get too far into the future.