New member. Caring for DH

TMCMNJ

My DH is somewhere between early and middle stage. He was diagnosed in 2022, at age 71, 13 months after my mother died of Alzheimer’s (she stopped taking nourishment) at the age of 93. That was a nightmare because it was Covid with my mom and no paid caregivers were available when she started needing 24 h caregiving so it was 2 of my 3 sisters and one of my 4 brothers. who did the 24 h caregiving. Except oops, my brother died of a stroke 4 months before my mom died. I say of that year my life was on fire. My remaining brothers and another sister were unavailable to help for various understandable reasons.

My DH (whose mother also has Alzheimer’s but lives across the country with two live in caregivers) is also hard of hearing, won’t wear his hearing aids. He has started confabulating and says I’ve done something (said something hurtful or done something to make his life difficult, hidden things, “screamed” at him etc.

Its weird and I feel so confused and I’m drowning in grief. I keep thinking I can reason with him because he can still act fairly normally. He will bring me a “paperwork” problem, (he’s obsessed with finances) and then immediately becomes enraged if I try to help. I’ve said the wrong thing, I am trying to confuse him, I’m “screaming” etc etc
I can’t seem to stop getting sucked in. I don’t know how to placate or calm him, I heard him on the phone telling his brother he was going to divorce me, and it hurts as if I didn’t know he had dementia. I should know better. I’m a health care provider with advanced degrees in psych, have a private practice where people ask me for help with situations, and I know what to say but I can’t do it. I do try to say the right things but I feel like all that he hears is either gobbledygook (Like the adults talking in a Charlie Brown video) or something entirely unrelated to what I did.
I am trying so hard to do better.

H1235

Welcome. I can so relate to your comment about getting sucked in. It’s it starts with a simple question from them, you carefully explain and then your told your wrong in no uncertain terms. You try to explain again in a different way (knowing full well they are not able to follow reason) and before you know it, its an argument. I have found certain topics are more problematic than others. I avoid these at all costs! It can make it hard to have a conversation since there are so many hot topics to avoid. It is hard to get your mind to just accept that you are always wrong and the person with dementia has all the “right” answers. I think this is even more difficult in the beginning when you let your mind slip into your old usual relationship and discussions. It gets a bit easier with time. So sorry you need to be here.

jgreen

Welcome @TMCMNJ Glad you found us, sorry it is under these circumstances.

There is a symptom in dementia called anosognosia - the physical inability to understand or recognize a deficit in cognitive abilities. The brain is slowly dying and you cannot reason with someone who has a ‘broken brain’. You’ve identified some ‘triggers’ that set your DH off so now you need to learn how to avoid those situations or come up with a response that will make your DH feel secure. Phrases like “I’m sorry…” or “how can I help you?” might work. I’ve even said “my fault” or “my bad” like @H1235 advised.

You might want to check in with his physician about medications to help DH with his anxiety.

There are some excellent health professionals online that you might find informative and helpful. While you are a professional in your own right, it is so much harder when the patient/client is your loved one! Hearing from a different perspective could be a good thing. Names are Tam Cummings, Teepa Snow, Natalie Edmonds, and Camille Sinclair. Each have tools and tips on their respective websites and many videos that cover a wide range of topics. A book recommended to me that I refer to often is The 36-Hour Day, 8th edition.

I have learned SO much from this caring group! Again, I am glad you found us. We all care for each other and YOU! Hang in there. And come back and let us know how you are doing.

SDianeL

welcome. So sorry about your DH. It’s more difficult to care for a spouse. Your relationship changes from spouse to nurse and your spouse becomes your patient. PWD usually take out their anxieties on their primary caregiver. Learn all you can about caregiving so you can help him. It’s not easy. It takes practice. You’re human. We understand. Hugs. 💜

TMCMNJ

https://alzconnected.org/discussion/comment/269649#Comment_269649

I’m sorry others go through this also but it’s good to know that it’s part of it. Thank you so much for you’re encouraging words.

TMCMNJ

Thank you for the resources. I appreciate you taking the time to respond so thoughtfully.

TMCMNJ

https://alzconnected.org/discussion/comment/269696#Comment_269696

I get so mad at myself when I tumble down this hole. Hearing from you and others gives me some energy to go on and do it another day instead of planning my escape to the state where my 3 sisters live.

jgreen

https://alzconnected.org/discussion/comment/269727#Comment_269727

💝

sherryandwilliam

Very very hard to have a brand new relationship with your spouse, You start have a relationship with the disease how to act and talk to the disease that has taken over Hard not to get frustrated, I found that alzheimer not only made him a different person, I had to be a completely different person as well.

Karen711

Hello TMCMNJ- welcome and sorry about your husbands diagnosis! This disease is living hell! It’s so true that, for married partners especially, but really for everyone, Alz changes both partners equally I think. It sounds like you understand what you need to know and do (there’s always more to learn obviously) but reacting in the face of unexpected barrages from your soul mate throws you off guard and it’s easy to react from your “old self, your old life” rather than the new one you must adopt to keep everything sane. It’s so easy during the moments when your partner is acting “normally” to be lulled into the old life and start interacting once again as though everything is “normal”. Diane is right in that it helps to think of your new relationship going forward as patient and caregiver. I remind myself of that constantly, as painful as that realization is, it does help. So many people here have felt like utter failures so often for our lapses into “humanhood”- and every one here will tell you it’s happened to them. But the truth is the people on this site are courageous warriors who succeed every day, hang in there and show up in the best way possible. It is not always perfect. There are great tips and tricks we can learn along the way. A lot of good resources have been cited above by others. You are not alone and you have very good company here!!!
Hugs,

Karen

💜