Advice on letting go of the guilt and next steps...

wmm0707

My mom is a recent Alzheimer's diagnosis (in the last 6 months) but has been on a steady, slow decilne since 2021. Since her actual diagnosis, things are rapidly declining and I have so much guilt that I am not there for her more. She lives with my Dad/her husband still but is mostly alone during the day while he is at work. She's 69 and has been retired for a handful of years. He is 72 and is not looking to or ready to retire. My sister and I have discussed a hybrid schedule for him so that he's home more often but it sounds like he is struggling to actually get work done when he is home because my mom is agitated he is "working" and she thinks when he's home, he has the day off. I go over to their house roughly once or twice a week but I also have my 2 boys (ages 4 and 5) with me and they all are similar in cognition so it's taxing on me with basically 3 children. I take her to lunch, we go on walks, walk to aisles of target and just try to get her out of the house and around some socialization and interaction. We are trying to push my dad to get a "housekeeper"(caregiver) in maybe a few times a week who can help out with my mom and give my dad a break and have him be able to focus on work while he is not working from home. He is struggling with losing his wife and balancing all of this as he is not someone who is meant to be a caregiver but I feel so guilty that I am not there more frequently (I live 45 min. away and tell myself I have to take care of my own life and family first) but I love my mom and she is one of my best friends so it's difficult waiting for my dad to step into action and it's even harder knowing I am not there more regularly and she's lonely. (she often tells my sister and I how she misses us and it's so lonely being home by herself.)
*She is in denial anything is wrong with her-doesn't accept or want to talk about her diagnosis.
*Both of her parents went through this battle with dementia and Alz and she was the sole caregiver for her mom for about a year. (She moved her in with us prior to taking her to a facility.) Which fuels some of my guilt that I am not more involved and hands on with her. (But i also don't want to step on my dad's toes and want to make sure he is the primary caregiver as he is her spouse.)

Arrowhead

DO NOT FEEL GUILTY. You do what you can, or what you feel you can, and do not feel guilty that you can't do more. You have limits, accept them. Do not do more than you have the strength to do. Also, she is not in denial, she has Anosognosia. It's a common condition where the person honestly doesn't realize that they have a problem. Do not try to reason with her because she no longer has the ability to reason. The symptoms you describe are common.

As for your father, try to not be too hard on him. I think caregiving is harder on men. Women have a naturally stronger ability to care for others. Men like to fix things, that's what we do. This is something we can't fix 😪 and it frustrates us. He needs your support at least as much as your mother does, maybe even more.

Learn all you can about the disease, how it affects the afflicted, and how it affects caregivers.

Always keep in mind, it's not her, it's the disease.

H1235

Welcome. There is only so much you can do. Learning all you can about dementia will be helpful and this is a great place for that. I have attached a few resources I wish I had when mom was first diagnosed. The anosognosia is a big problem for many with dementia. Since they are not able to recognize their limitations the person with dementia can put themselves in dangerous situations. I would be concerned about her being alone during the day while your dad is at work. My mom decided to fry some bacon and forgot about, it could have been very ugly. Would she know what the fire alarm is if it went off? Would she try to put a fire out. Does she think she is perfectly fine to do things during the day that might put her in danger ( going up and down step, mow the lawn, walk to the corner store?) This is so difficult and you have to also find a way to work with your dad, without stepping on toes.

DBAT.pdf

understanding-the-dementia-experience.pdf

SDianeL

Please don’t feel guilty. You have your hands full already. Your Mom should no longer be alone. She needs 24/7 care. If your Dad is not ready to retire, I would discuss with him the need to place your Mom in memory care as soon as possible so she gets the care she needs. Read the book “The 36 Hour Day” and have your Dad read it too. Meanwhile check into day care for your Mom. Your county’s Agency on Aging should be able to assist.