I thought I would be better prepared

vjw

Helped take care of my mother years ago when she was diagnosed with Alzheimer's. But not even that compares to taking care of a spouse of 40 years.

My husband, now 80, was diagnosed with Alz in 2020. Looking back to 2018, during our move, the signs were there and have since progressed.

Short term memory is now gone. Long term is slowly going. He acknowledges his short term memory is gone but won't accept the diagnosis. His reasoning is that his brain is so full of information that there is no more room

His license was finally revoked. That was a nightmare process. But a relief for me

He is being treated for his mood swings. There are days I feel like I'm walking on eggshells.

He's moody, anxious, agitated, He asks the same questions over and over and over. He's up and down 1 - 2 hours ever night when he says he's going to bed.

I think he's becoming paranoid I can't talk on the phone because he'll mute the TV volume or come in and sit next to me listening to every word and wants to know what I'm talking about. I have to be careful what I say to anyone when he is around because he's mentioned a few times now that he feels like I want to get rid of him and put him in the "funny farm".

He can still dress and bathe himself. But I drive him to all his appointments and administer his medications and remind him to wash his hands.

i am regaining my independence. I now handle all decision making. This is a hard process for me as I have now taken over the tasks I used to depend on him.

I am mentally exhausted. Some days my stomach feels like it is in knots. I cry at night and pray that I have the strength to get through this.

Thank you for listening.

Iris L.

VJW, your DH won't accept the diagnosis because he has anosognosia.

Iris

vjw

Interesting you say that. I had done some research on the internet last year and that word came up. I had mentioned it to the kids. I had forgotten about that until you mentioned it. Thank you!

M1

Welcome to the forum vjw. You describe the difficulties very well. It's heartbreaking to lose your spouse this way. I dont think there is any way to be prepared for it. Even the 24/7 nature of childcare is different from this. Are your children available to be of any practical help? Mine are not, although they do provide emotional support.

I am glad he is getting treated for the mood swings, you need to be sure his docs know about the paranoia too. Have you researched getting home help or day care programs that could give you a break? Or memory care options?

This forum has been a big help to me, i hope it will be for you too.

Denise1847

Hi VJW,

I am with you on the crying at night and taking over everything. Please tell the doctor about the meds to see if they can be adjusted. Can you take a walk, a nap, go into a room and read? It is important to escape to keep your peace. Please hang in there and be assured that you will get stronger and be able to handle this but it will take time. I now manage everything, but I used to think I would be lost if he wasn't able to manage his part of the responsibilities. I no longer fear that and you will get there too.

Please seek counseling, even if it is virtual. It will help to talk to someone. Pray, pray, pray for strength and guidance. Educate yourself via this site, the book "the 36 hour day" and Tepa Snow on You Tube. Exercise, meditate and generally take care of your health. You are going into battle and need to be strong. You will go through the grief process over and over again (anger etc.) but then you will get to a point when you realize that you just need to push on, that looking back only hurts and that you are going to fight this battle by moving forward one minute, one day at a time.

PS: Get an attorney to get your affairs in order

Sometimes overwhelmed

vjw,

I'm so sorry you are going through this. I'm a 24/7 caregiver for my husband who is 80. We've been married 55 years.

He was diagnosed, with mixed dementia--vascular and Alz., at the end of 2019. I now have to help him with all ADL's.

When my dr. saw how the stress of everything was affecting my physical and mental health, she recommended that I call my husband's primary care dr. and ask him about getting a case manager/ social worker involved in helping me explore resources. We video conference with a geriatric psychiatrist approximately monthly about current behavior, what's currently going on, and medication adjustments, if needed.

I found a caregiver, recommended by an OT, who I hired to come to the house for a few hours, twice a week, to give me a (sanity) break, and an opportunity to see friends, etc. She has been invaluable.

But, there's no sugar-coating the difficulty of being a 24/7 caregiver of someone who needs help with everything from toileting, grooming, dressing, medication administration, food preparation, appointments, etc.

I'm currently in the process of trying to research (via medicare.gov) and interview facilities-- and also checking out if hospice care would be appropriate at some point, sooner or later--so that I have a plan/ place lined up if/ when a crisis happens.

I'm new to commenting on this forum, having only commented once before.

Iris L.

VJW, it is my mission to alert new members to anosognosia, because it is a crucial factor in caregiving for the PWD. About seventy percent of PWDs exhibit anosognosia. New members are rightly frustrated because they believe their LO is in denial. They are waiting for their LO to "wake up" and ask for help or to accept help or to thank the caregiver for providing help. But this never happens because the PWD truly believes he or she is fine, and sees no need for doctors, medications, changes in household routine or help. I believe that once the caregivers understand that anosognosia is real and is a characteristic of the dementa, then they can have a different perspective, and won't be waiting for acknowledgement from their LO that might never happen. Unfortunately, professionals rarely warn families about anosognosia.

Iris

vjw

M1, Yes, we moved to be back near the kids, They have been very helpful both physically and for emotional support. They see the changes, but they don't live with this 24/7 and they truly don't understand what I'm going through.

I bought the 36 hour day book many years ago when my mother was diagnosed. It's a very informative book and highly recommend it

This has been really difficult for me. I hate making phone calls. I hate the entire process in order to seek help. But I am at the point of being so overwhelmed , I know it's time and I am in the process of looking into what is available in my area. I know this is for the best, I can't do this by myself anymore but at the same time I feel like I'm betraying him and he can be very manipulative, and that does not make it any easier on me.

Rocky2

vjw,

Welcome to the forum. I'm sorry that both your mother and DH have been touched by this awful disease. I can understand your feeling overwhelmed. I think all of us in this caregiving role feel that way from time to time. I hope that your participating in this group of people who truly understand will be of some help.

I am caring for my DW of 41 years who is a type 1 diabetic and was diagnosed in 2019 with EO Alzheimer's. DW is now 66 and has recently been diagnosed with cervical cancer. We don't have family nearby, but do have excellent support from our church and medical team.

I encourage you to take care of yourself and seek out as much support as possible. You are clearly a caring and strong person. But none of us can do this alone regardless of how strong we are. If you are a person of faith, I would urge you to regularly pray and take in God's word through Bible reading. I've found this invaluable.

You are clearly striving to make the best possible decisions and provide loving support for your DH. I agree with the others who have urged you to keep the doctors in the know regarding new or worsening behaviors. this is important not only for quality of life, but also for safety. Know that you are not betraying your DH by making decisions that are best for him and for yourself. Rather, you are acting in love.

Tom