DH has MCI - Support Appreciated
A little background.
I am 65 and EA is 72. Married 15 years. EA is a liver transplant recipient 14 years ago, Vietnam vet who contracted Hep C while serving, diagnosed with MCI September 2022 and deals with chronic pain.
EA is still able to perform daily living skills, working remodeling projects around house and will drive to local home improvement stores.
EA has not always been the easiest, but we now seem to live in constant conflict. Short-term memory loss was evident post transplant, but now we've reached a new level.
I don't feel I have anyone to talk to since EA has made most relationships a challenge. I am starting to be more active (walking daily, support groups, returning to church, etc.) to provide me some "me time".
Feeling overwhelmed and alone.
Beth.
Comments
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Stndfm welcome and sorry for the reason you had to find us. As much as we tend to focus on our lowd, we also need to set up support for ourselves. You sound like your doing well in that area. Keep up doing that because you'll need to recharge often as a caregiver. Others will fill in the legal stuff you need to do and offer great ideas of how to survive caregiving.
I have placed my dw she's been gone over a yr now. But caregiving didn't end at the door. I am 66 and dw is 69. About yr 13
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I'd just like to welcome you. It's great that you are doing the things you are. I'm guessing since you have a local group, you probably don't have many questions about seeing a very important CELA (certified elder law attorney). But if you do, or if you have other questions, just post. Someone will be along to help.
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You are not alone Stndfm. Your posting is almost an exact duplicate of my life. My husband was diagnosed in 2020 with Age-related cognitive decline, then Early onset Alzheimer, as of 2022 it's ARCD again. No matter what he has it is difficult watching him deteriorate.
He will not heed any medical advice and breaks appointments after asking me to schedule them. He still does his daily personal task and can drive short distances to familiar stores; I do everything else. Regularly he seems to constantly try to start an argument and can be verbally abusive. It is like living with a moody teenager.
I am his only caregiver. There are times I feel sorry for him, but other times I just don't like him. I've gone through the stages of grief with this -- denial, anger, bargaining, depression, and acceptance. I have been so depressed that I'm getting mental health counseling.
Stndfm your comment to be more active for self-time is great. This is something I must do at least once or twice a week. You are not alone.
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Keep up the good work with physical activity and socialization. It really helps. It is important to remember that PWD can't help some of their actions so try not to get angry, but it is difficult. Before my DH was diagnosed, I was so frustrated with him all the time. It helps to keep the disease in the forefront of your view of him. At least it does for me. Read the "36 hour day" and check out Tepa Snow on You Tube. Stay well and keep us informed.
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We had back to back days with doctor & dentist appointments. Wednesday was with DH's transplant physician. Everything is working fine. Thursday he a dental appointment. We are working towards getting anew set dentures. We arrived late because I had the wrong time in my head. DH bristled at possibly needing to reschedule. Then it was questions about how much I was paying and the total costs. Then it was a different dentist. He was frustrated and angry. I ended up in tears because of his inappropriate behavior. The dentist was great in getting him calmed down. DH just seems angry all the time.
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One reason for him being angry all the time is him being overwhelmed by too much activity in his day. PWDs cannot tolerate stress! Back to back days of appointments are stressful. They are stressful to me. One doctor appointment per week or every two weeks is enough for me.
How is his chronic pain being addressed? I also have chronic pain. I would be angry all the time too, if my pain were not addressed and relieved on a daily basis!
At this point in his life, with s/p liver transplantation, Hepatitis C, Vietnam vet and possible PTSD and possibly Agent Orange contact, MCI and chronic pain, he has a lot going on and he needs relief. A good plan needs to be made to address the rest of his life. You have a lot going on too, so I will let the other members continue from their point of view. I gave you my point of view as a patient with multiple conditions.
Iris
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Thank you for your perspective. Back to back appointment won't happen again. I'm thinking that maybe we can get an anti-anxiety med (i.e. Xanax) he could take the day of any appointment.
We have had no resolution for the chronic pain. It's been there since his transplant. DH took pain meds sporadically initially, but no longer wants them - much less his physician won't prescribe any more. He recently tried CBD which seemed to help. He is also in the process of getting new dentures.
We are remodeling our house and DH is doing the bulk of the work. I've tried to have him slow down, but his mind won't let him. He always has a thousand things to do - which brings on stress and more pain. I recently told him that I think his problem solving and ability to prioritize tasks seems to be diminishing.
My biggest stressor is that I don't seem to say or do anything correct - I'm worn down from his negativity and criticism. I still work full time (age 65). DH is okay to be home alone and self-sufficient with daily living skills.
Thanks.
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@Denise1847 Thank you for the Teepa Snow referral. Her information on de-escalating was very helpful. Now to put it into practice. STNDFRM
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I hope you can get a resolution for the chronic pain. I know CBD helps, but be sure of where you get it. It's not always the same. And get the OK using it from the doctor. It could cause problems with certain medications.
I understand why he doesn't want to quit when he's working. I'm the same way. " I recently told him that I think his problem solving and ability to prioritize tasks seems to be diminishing." How did that work out? I'm guessing not so good. It might be in your best interest, and his, to not bring up his shortcomings. That usually does not go well.
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We never stop learning.
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Hi Beth,
You are not alone. My DH wasn’t easy to get along with before the dementia, but I’m now thinking he’s had it for a long time. If you haven’t already, try to get a driving evaluation. DH was having trouble determining how close the cars in front of him were and I didn’t know it. He was limited to short distances during the daytime. In the short distance from home to his barber shop, I’ve discovered he’s been into arguments with the gas station cashier and also with our pharmacist. His next evaluation is in less than a month and I’m sure he’s going to lose his license. Boy, do I dread that! He’s already mad at the world and I’m enemy #1.
Regarding the chronic pain…I have CRPS (complex regional pain syndrome) and achieve much relief during flare ups by eliminating sugar. I use stevia with no problems. A great book about it is Sugar Crush.
Hang in there. Hugs
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Thank you! I will do that tonight!
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What a blessing!
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Lola V, thanks for the info about CRPS. I will read about this. I already use stevia. Iris
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Hope it helps!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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