So Tired of the drudgery of Alz Life w/o a break

Denise1847

Today was just another day and I should have been able to just go with it. However, the chronic nerve pain in my back reached a new high, coupled with my DH's uncooperative behavior as I had to take him with me to the podiatrist for a follow up to a stress fracture in my foot, then to a specialty shoe store for prescribed shoes. As we know, Alz patients lose their ability to have empathy (which my DH lacked before the disease). He was annoyed that he had to be there.

It is interesting how certain things will just cause me to spiral into feeling like I just can't deal with this anymore and he is only at stage 5. I feel very badly for him, and he has no clue to the struggles I have with damage control, taking over all the responsibilities and my never-ending pain.

I feel like I am swimming in a turbulent ocean with a backpack and an anchor dragging me under every day. I sure hope I get a better perspective tomorrow.

Brokenhearted in Illinois

Dear Denise ,

I wish I could say something constructive. But I feel

exactly the same way.

housefinch

I’m so sorry. I used to have complex regional pain syndrome. Even with empathetic family members by your side, chronic pain feels isolating and enervating. I would not discount any stage as somehow things “shouldn’t” feel so hard. Sending you hugs.

M1

Tough posts from you Denise and Broken Hearted tonight. Makes me remember that there is an upside to MC placement, hard as it is. Sounds like you both need more help than you have and I'm so sorry about that....

BPS

My wife is not as difficult as many on this site. I really admire the commitment of some of the people here, our marriage has not been all that great, so I don't know if I have that kind of commitment. I often wonder how much of a caregivers life should be sacrificed. When is it better for everyone including the patient for them to be somewhere they can get more care than it is possible for one person to give no matter how much they care, but I do know that my feeling are much better some days then they are other days and I don't know why.

Jgirl57

I understand your feelings of struggling with every day chores, errands. Last week the lightbulb in our laundry room went out. It is too high for me to reach so I know I will need to get the step ladder out. I have avoided doing this because my HWD would want to help, insist he could do it and it would become harder than it needs to be. He would not be able to complete this even with my assistance. Our son in law could help with these things but that puts my HWD into a tailspin . So I just do laundry in the dark until the spirit moves me to deal with it . Denise, you are indeed chief damage control officer. Have a good day tomorrow .

gampiano

J Girl 57,

That light bulb story is all too familiar, and it really describes the every day dilemmas we face as caregiver spouses. My husband would become unglued every time a repair person came to the house. I too did laundry in the dark for many days. Maybe you can take your gut for a ride and your son in law can come over while you are out?

The things we have to contend with that no one could imagine....I so remember.

harshedbuzz

@Denise1847

I am so sorry. You write "only at stage 5". IME with dad, who was never a particularly pleasant individual, stage 5- early stage 6 where the most challenging for mom and me. To be sure, there are difficult and heart-breaking milestones throughout this journey, but for us this stage was uniquely awful. He was like a large uncooperative toddler. Dad had just enough mentation to deliberately make life miserable for my mom. He even told me he was very unhappy with things (like not driving and moving near me) and wanted to make certain she was too.

The good news is as he hit the later stage 6 decline, this behavior lessened and finally faded. In the final weeks of his life, we was actually warm and very sweet which was a side I had never personally witnessed ever. Until then, psychoactive meds did help dial things back a bit. Adding a geripsych to your team is worth looking into.

HB

M1

HB has said something i was also thinking when i posted last night: "only stage 5." I think we have to remind ourselves that stage 5 is late-stage dementia, severe disease. You are underestimating what you are coping with and ought to give yourself a virtual hug and pat on the back.

jgirl re the light bulb story: To this day i have to be careful what I say to my partner (in MC for20 months) because she wants to help or go with me, or will say regarding certain chores, "well we can do that." This was a big, big issue before she went to MC too, she wouldn't let me hire out any of the big farm chores. FWIW my current dead light bulb is in the chicken house, not the laundry room. You have motivated me to buck up and go get the ladder. She's not here to stop me, so I currently have it easier than you do.

ghphotog

I have my own war stories, this morning was a rough one. I'm sorry you have to try and manage him, your back pain as well as keeping up on everything else. Can't imagine how difficult that is for you.

Others have shared some great things to try and help so I won't add my two cents. Try to find help because you cannot keep this up indefinitely.

Denise1847

Thank you all so much for sharing your stories and encouraging me. I know we are all struggling, and I think this group is so amazing how you rally around each of us when we hit a low. I hope to be able to support each of you when you have a challenging time (what am I saying... like all of our times aren't challenging).

I did reach out to my doctor to increase my antidepressant. He is very supportive.

Thank you all and I am sending a virtual hug to you.

LindaLouise

Reading about that lightbulb absolutely resonates with me! My DH always wants to help, which turns any task into utter confusion and nothing being fixed! As others say here, it is so nice to know I'm not alone in this strange world! The handle on my toilet doesn't work right - you have to hold it down for 10 seconds in order for it to flush - but it's been that way for months because any attempt at fixing it results in me trying to keep my DH from implementing his ideas of a fix and probably disabling the toilet completely! I appreciate the idea of taking my DH out for a walk or drive and having someone else come in to fix the handle. I think I'll do exactly that!

Denise1847

Hi LindaLouise,

I feel your pain and you are not alone. I have a broken toilet seat, a broken generator, a broken snow blower, and my DH fusses every time I talk about having them picked up for repair. I have to put signs on the dishwasher and clothing washing machine when they are running so that my DH doesn't open them. My nephew went into one of my kitchen cabinets to look for a container and he was blown away by the disarray of plastic bowls and tops. He thought it was my doing. I just shrugged "well, it is like camping out in this house. You get used to it."

Who would have ever thought we would have ever been able to live in this craziness?