Support Group

I went to a support group – it was for Alzheimer’s but since LBD (Lewy Body Dementia) is a form of dementia, I thought it would be of help to meet with people with the same problems.

It was interesting; the group was mostly women.  While they were talking about adult day care and putting alarms up, I realized we are way beyond that stage.  We went through those stages 10 months ago. My husband, running away, wanting to go home (I use to takeSupport Groupshim from the house drive around and then come home so he believed we had left a place and came home). The jealousy and thinking everyone was stealing from him. That was really tough – now it is even harder in a different way.

Now it is more emotionally trying, while I use to be able to get him in the car with some help no longer is that possible. The last time he was out June or July, we went over to my brother’s house. We used the wheelchair, I am sure I blogged about it. That was over two months ago now he lives in his hospital bed or recliner.

My husband doesn’t seem to really mind but if he stays in his chair more than 4 or 5 hours, he is completely exhausted. At this point, he is living in his own world – sometime he gets upset but most of the time he seems content.

Last week when the nurse came she said “ I know this is hard but the hardest part is yet to come”. Boy is she right – Dolly told me that I need to start thinking about my future and putting things into place or at least thinking about what I will do.

That is so hard – I really feel like when it happens I am going to die.

Share This Post

Posted in Challenges, Dementia, Losing Loved Ones | Tagged , , , , , , | Leave a comment

Avoiding the Inevitable

I don’t know why I am avoiding writing in my blog.

Everyday there is something to say – but I don’t. Then I forget the moments. Am I trying to avoid the pain , something to think about?

Lately I have been really feeling lost like I am in the middle of the ocean my raft sinking Avoiding Painand there is no shore in sight.

I am going to a caregivers group today I am not sure if it is a good fit, but I am hoping it is.

My husband is having problems  moving his legs even with two of us helping (one in front and one in back) it is becoming impossible so we are using the wheelchair more.

The nurse came yesterday and said he is wasting – he is so skinny he may not have the muscles to walk, just one more sign my life will be changing forever.

The other day I had my husband in the recliner, and it looked like he had a bump on his cheek – when I went to take a look it was his cheek bone. That is what they call wasting when someone is losing weight and muscle…

When I get up in the morning if he is awake I say “good morning” in a sing-song voice. He used to smile not so much anymore. When I go over to kiss him, he looks me in the face and talks to me about a serious subject – I don’t know what it is but the look on his face show intensity.

I have been with this man long enough that even his facial expressions tell me a story.

Share This Post

Posted in Challenges, Informational | Tagged , , , , , , , | Leave a comment

Respite Facility?

Monday I was feeling so sad and overwhelmed I was on the verge of tears over everything.

When Jaynie came in to help with my husband, she said you really should look at the respite program that Creek Side has (our hospice provider). I have been hearing about this for the last 10 months that they have a program that will put him in a hospice facility for up to five days a year. About everyone who I connect with in hospice has one time or another said I should take advantage of this, so I can just regroup and get myself together.Facility no way

I never really considered it until Monday – it would be so nice to be able to leave for a few day by myself and just do nothing.

The problem is I don’t want my husband to wake up in a facility and think I have abandoned him. I don’t want him to go through anymore sadness than he has.

Since he has been getting worse there are days where he sleeps and make no sense at all (so maybe?).

I asked some people what they thought whose opinion I value. Then yesterday morning when I walked into the bedroom my husband looked at me and said where have you been??

That settles it – he is not going to go into any respite facility – even for five days.

I don’t know how I would ever leave him and walk out the door. He still has days where he is smiling and joyful – that make it all worth while.

I Love Him So…

Share This Post

Posted in Challenges, Dementia, My Life | Tagged , , , , , , | Leave a comment