Having issues coping!

Baileyp

My mom was diagnosed about 5 years ago with dementia. But in the last year it has progressed extremely fast. We placed her in an assisted living facility almost two years ago. 

My mom use to be so active in many different groups and loved to spend time with my niece. Watching someone go from so active to not able to do anything is hard to watch. Every time I visit I get extremely depressed after. I always get back in my car and cry before I leave the parking lot. 

What are some ways people have found to handle watching a loved go through such a terrible disease? Willing to take suggestions. 

ButterflyWings

Bailey I just wanted to let you know I hear you and see you, and share your pain. Others will come along soon and can share their experiences and suggestions. In the meantime, welcome to our group that no one wants to join, but where we share in the best knowledgable and caring network of those who have been, are, or will be exactly where you are on this journey, at any given moment.

I am still trying to figure things out myself, day by day. Not yet 3.5 years post diagnosis, we are in stage 6d. So, it seems like things are progressing quickly but that is because my DH was well into mid-stage before we finally got a diagnosis. I do wonder at 5 years in, whether AL is not providing the level of support and supervision that your LO needs to ease the effects of dementia at this stage of progression. She may be able to do more with additional help initiating activities that AL does not provide. Something to ask about at her community maybe?

One thing I have always done, is learn as much as possible about what could happen with AD, so at least we would not be caught off guard. This forum and many great links to recommended articles is the best source I have found. Then, I try to focus as much on what DH still can do, versus only what abilities he is losing -- those which always seem to be in our face and take our breath away, right? But our LOs are more than that. And it is part of helping him along this journey with dignity and some measure of purpose each day for me anyway.

I am sorry for your sadness. We in this forum understand it well. Caregiver angst and stress is so real. Take care of yourself as best you can, as often as possible. Eat, rest, breathe, stretch, and come here as often as you can to post and read up on anything and everything that may come your way with this difficult disease. We are with you. 

The "other" one

I'm sorry you're feeling depressed after visits.  I'm there with you.  Many times waiting for the elevator is excruciating so I can escape to cry in my car in the parking lot.  Mom has been in a nursing facility for 3 years now.  Some days or weeks are easier than others.  I'm not sure if it's my state of mind going in or how my visit goes.  Then there are the times I just don't feel up to visiting, then the guilt creeps in.  I have no advise, just letting you know you're not alone.  I will be following should someone have some helpful advice.  Hang in there.

​fesk

I am having the same struggle. I think the advice ButterflyWings gave to try and focus on what your mom can still do or enjoy is good. All along I have tried to adjust and modify activities so my mom can still participate and feel useful. As the disease progresses, this becomes more difficult. 

I think the small losses we see every day are difficult to watch and cope with. It's constant loss that can continue for years. It is depressing, and I think it is ok to feel that way. When someone dies, we grieve. We are upset, depressed and in time the pain eases. With Alzheimer's, we are losing parts of our loved one daily. It's like experiencing the death of the person we know continuously - at least that is how I feel. When the decline was slower, it was easier to adjust to the new normal. As the disease progresses, I'm finding it more difficult. 

I think it's normal to feel the way we do, but also important not to get lost in it. I'm taking it day and day and still trying to figure it out. I do think having a place like this helps. I don't think others who don't experience this can truly understand.

Fairyland

It’s so hard isn’t it. I am only at the stage of finding a suitable facility for my mom, and I feel sick, worn out, defeated and alone.

These words from others on the same journey really help.

It makes sense we are sad, so many losses along the way to cope with, big and small.

And of course I am thinking about myself too- what will become of ME!?! In the sort and the long term.