My friend is starting this journey, I vent

David J

When we moved into our house 32 years ago, we got lucky. Our next door neighbors are great people and have been our good friends the whole time we have lived here. We even have a bluestone paved path between our two houses. 

As DW’s dementia was worsening, our neighbors were very supportive and helpful.  A few years ago, Dan (not his real name) started asking questions about behaviors my DW was exhibiting and comparing them to behaviors  he was seeing in his wife, Ethel (not her real name). Does she forget taking her pills?  Does she want to visit dead parents, does she lose things, can she follow what’s on TV?  I noticed obsessive behaviors and sun downing occurring.  With the Covid isolation the last year, we have only visited briefly from 6 feet away, out in the yard. 

Yesterday Dan told me that Ethel was diagnosed with AD. They are both in their mid 70s and in great physical condition. I feel so sad for them both, knowing what they are going through now and what they will experience later.  They have children and grandchildren, all local, so they have support, but I am still heartbroken for them. Ethel doesn’t know her diagnosis and thinks she’s just fine.

On top of that  DW and I have had a tough week.  We are still breaking in a new aide, and DW has had a negative reaction to her. DW called her a bitch and has gotten angry at her, telling her to shut up or to go home. While I was out of the house, DW got physical with the side and hit her with the TV remote several times. The aide wasn’t hurt, but I got a call from the agency about it. Yesterday she was all sweet with the aide so maybe it will work out.

DWs sun downing is getting worse.  From mid-afternoon until we go to bed she is pacing and mumbling, very agitated and seemingly upset about something. She moves things all over the house and puts things where I have to move them. She makes little pads of toilet paper and leaves them every where. The dog’s toys get taken from the floor and put on the dining room table, kitchen counter, coffee table, etc.  I’ve taught the dog not to take anything from the table or anywhere other than the floor, so she gets very confused about this behavior.  I laundered the sheets and made the bed yesterday, and when I took the clean sheets upstairs to make the bed, it was covered with stacks of clothes, throw pillows from the living room, dog toys, etc.  I lost it.  I swept everything off the bed to the floor.  DW, who was right behind me as usual, carefully moved the 16” rawhide dogbone from where it landed to right behind my feet. Of course I tripped over it. While I was making the bed, DW “helped”.  Mostly she was just in the way.  At some point, the big dog bone appeared in the bed.  This time when I threw it, it landed in the corner behind the Depends.  

I am not proud of losing my temper but it is just so hard to take.  Day after day it’s the same over and over.  The only change is when it gets worse. Alcohol doesn’t help, mindfulness doesn’t help, the little bit of respite I get doesn’t help. 

I didn’t start this post as a vent but I guess that’s where I ended up.

  

Ed1937

David, I'm sorry about your friend. You know where that's headed. And I'm sorry you are going through such a difficult time with your wife. Forgive yourself for losing it. You are human. Feel free to vent when you want. We're here for each other.

LadyTexan

Dear David.

I am so sorry about your friend and what you are going through in your household.

Some days are just the perfect storm of awful. It sounds like your day was all of that with an extra double dose of awful on top.

We all lose our tempers. We are human. This journey can suck the soul right out of us. I have no solution. I will tell you that I understand. You are not alone. I am sending love and cyber hugs to you and your loved ones.

M1

David I laughed and cried for you simultaneously.  We have days like that too, plenty of them.  But you told the story well, for sure.  No worries, my friend, we've all been there.  %#$%#@ dog bone

David J

Dear Friends, thank you for your words and thoughts. There are days when I can’t see keeping on this way, and your support helps me move forward. Other than this forum, I am alone.

Jeff86

David,

How you must grieve for your friends and neighbors, as you know so much more than they can about their path ahead.  I am sorry.

As for you—well, you know this disease brings out both the best and the worst in us.  The best because caregiving is a supreme act of love, because it is so demanding but we persist (we must!), because we discover depths of patience and kindness, because we feel more useful and needed than we ever have.  The worst because after we’ve given everything we have to caregiving, more still is demanded from us and we find ourselves wanting, inadequate to the stunning enormity of the demands.

You are such a dedicated caregiver.  Your DW is so fortunate to have you looking after her.  A lost temper is a minor and soon-forgotten incident, and a completely understandable one.  When you vent, here, you know you are speaking to a completely sympathetic community.  We have all been there.

You sound like you could use respite/relief.  Could you explore that?

David J

Thanks Jeff. I have been looking in to respite care. While researching local MCFs for a potential future placement, I also inquired about respite stays. Some facilities only have AL beds for respite, some have minimum stays of a month, and none could guarantee availability at any particular time. If they have a bed, then OK.  If not, oh well. It’s hard to plan. 

abc123

David, I am sorry about your friends next door and I sincerely hope things will get better for you.