In Sickness and in Health…

It boggles my mind many people from all walks of life tell me that my husband is so lucky – or I am so different/special from most people because I choose to take care of my husband when he is dying.  If that is the case what is wrong with society it just seems perfectly natural to me that when you love someone, you take care of them. Remember that part “through sickness and in health”!

As tough as this is emotionally there isn’t a day that goes by I am not grateful to be able to express my love to him.

I know sometimes people we love end up going to a nursing home like my grandpa.  He in sickness and in healthhad Alzheimer’s he was a lot bigger than my grandma, he started getting physically aggressive. It broke her heart, but she had to put him in a rest home; she didn’t have a choice. The one she chose was right down the street from my mom’s house, and she was there every day feeding him, taking care of him and being his advocate.

My heart breaks for people that are put into rest homes like they are being warehoused just waiting to die. They don’t have visitors and somehow their relatives think they will not know that difference it is sickening.

The other day a friend of my husband’s came in who he hadn’t seen for a long time the biggest smile came across his face. Don’t tell me he wasn’t happy and aware that he was loved and cared for.

As time has gone on my husband has all but lost his voice literally he whispers 90% of the time. He is not eating very much some days nothing at all. He has gotten so thin he looks anorexic all signs of him losing the battle.

I did see more frustration this morning he didn’t want to go showers, and he was fighting about getting cleaned up. The more I insist the more he resisted – but he has to get it done we don’t want bed sores or problems.

Like the nurse said he is having more and more downtime less and less good times. I still see his spark and smile but a lot less often.

I may have said this before, but Dolly (our nurse) has been talking to me about getting out and planning what I am going to do. Getting involved with projects, etc. because when the time comes if I have built up these things it will help.

I don’t know how true that is – it is really hard to think about doing anything besides spending time taking care of him…

I will try…

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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.

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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.

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