Living with a dementia patient

Jmeidinger

After working with a specialist in dementia the past few weeks, we've discovered my mother does have the alzheimers and vascular dementia the hospital diagnosed.  But those two are likely as a result of FTD which started perhaps upwards of a couple decades ago when she was in her mid 50s and started making strange decisions.  Her diet suffered.  She stopped drinking water.  She wound up with Type 2 diabetes and kidney disease due to dehydration.  Both of which appear to have caused the alzheimers and vascular dementia.  (A working theory from the specialist we're working with.)

Which sure explains why I felt like my mom was a pod person ten years ago.  I had moved away for a few years, and returned to help her with her business when she asked for help.  And something was ... off.  This person who had been my best friend for the first 30 years of my life was someone I didn't understand anymore. 

She's had a bad few days.  Really bad.  The type that have exhausted me.  I'm not proud, but yesterday it was so bad I lost my own temper and had to go in the back bedroom and lock the door.  Put in headphones and watch a movie. I don't feel bad about doing this anymore.  It is what it is.  I'm no good for her when I get pulled into arguing with her when she's insulting me and hitting me on the head because I won't help her haul her clothes out into the car to "go home." 

It is impossible to describe what caregivers see and do on a daily basis to people who have never done it before.  With the added toll of it being a beloved family member.  I've been doing this six months now, and it's so much easier.  But still mentally and emotionally exhausting on an almost daily basis.

I just wanted to say ... you people are all unsung heroes.  Every one of you caring for a family member like this.   Our society doesn't pay enough attention to the ravages of these diseases and the toll they take on families.  It's up to us to tell each other "good job."  "You can do this."  And "It gets better" if you're new at it.

You have my respect. 

 

Dana E.

I know what you mean. My husband and I moved in with my dad and mom last August. We were going to put dad in a MC facility in July, but the day we were going to move him in, they called and said that there was covid in their facility. So we moved in to help mom care for him. They have been married 58 years. But mom has pretty much checked out now and leaves his care to me and my husband for the most part. My husband carries the bulk of the work because dad responds better to him than to me. Dad is sometimes mean, but for the most part, he just seems sad. He has lost control of his bowels, he cannot swallow well, and vomits often. Tonight I realized that he wasn't swallowing his food. He was just piling food into his mouth until he almost choked. So now we will have to feed him. I'm looking for ideas for soft food for him. 

I'm sorry to hear about your mom. It is so hard when their personality changes. Dad was always pretty smart alecky but his comments now are just plain mean. But he's too weak to hurt us physically. .. Well, I say that, last week he hit my husband and knocked out a crown and cracked the tooth beside it. But that had never happened before. 

My prayers are with you. 

Dana E.

May flowers

Jmeidinger, I’m sorry for what you are going through - dementia is such a horrible disease no matter what the cause. I can relate to having to step away - for me it’s a bath and a good movie and let my husband take over for a while. Is there a caregiver you can hire for some respite, even if it’s a few hours a day? 

mommyandme (m&m)

J - thank you for your post.  I appreciate your message and so sorry for this cruel adventure that you’re on.  I feel your pain. 

Dana - it sounds like your family would benefit from hospice.  We started it in mid February.  My mom is definitely not on her deathbed, not even close to that.  With dementia, hospice works a little differently than the usual criteria of “6 mos left”.  The support is invaluable. So sorry for your struggles.   

WhatNow?

You are so right @Jmeidinger.  There are so many ups and downs as we travel the path of this disease with our LO.  No matter what you tell a stranger or a friend, they will never really truly get it, unless they have also traveled a similar path.  I used to be one of those.   

I'm in this with my sister at least and I think from the start we have made it an extra point to tell each other "Thank You" when we complete a task for our mom, because except on rare occasions we don't get that from her and she will never truly understand how much we have taken on for her or even why.  It is just a little reminder that we know that she would be appreciative if she could be.  

You got this too and thank you!

2020NM

I find comfort in reading others post, especially when I’m frustrated. My mother has shown passive aggressive behavior (normally directed at my dad) now that she’s living with me it’s all directed at me and my dad is the kind one (her words) I’m glad he’s able to experience this change. Thank you for sharing.

kevinhenderson

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