I am being haunted with images of my Aunt in the rest home, so small and frail asking to go home to her family.

My aunt Marlene was such a pivotal part in my mom’s life; they lost their mom when they were 8 and 9 years old. They were best friends in high school. Aunt Marlene had five children and my mom 5 because we were poor my dad battled alcoholism and was not in our lives much of the time my aunt Marlene would bring toys on Christmas when my mom didn’t have enough money. She sent my mom money every month to make sure to help take care of her needs.

When my daughter had her son who was born with birth defects we knew he had limited time on this earth that Christmas my aunt Marlene gave up her own gifts and had everyone buy presents for Hunter and my daughter and her husband. She went around collecting money to help, and they had an amazing Christmas together. That was his only Christmas, he died a few months later.

Generous, sweet, beautiful and kind  she lost a child who was only 2 years old he got hauntedoutside and froze to death soon after I was born and Aunt Marlene and Uncle Ross dotted on me whenever we saw them.

Because of my mom being a paraplegic needing surgeries and medical help, we kids were always making sure mom was taken care of visiting her and loving her.

My aunt used to say you kids are so good to your mom, I don’t think my kids would do the same.

I though surely they will, when she found out she had Alzheimer’s Aunt Marlene didn’t tell us mom had passed away by then.  My uncle Ross took care of her or tried, but one day she fell and broke her leg, so they put her in a facility until she could “heal.”

I went to visit her; it was just up the street from my house, my cousin was there and reminded her mom who I was. While visiting my aunt said how lonely she was and couldn’t wait until my uncle Ross came. She didn’t like sleeping alone.

I guess at that point her kids decided their dad could not take care of their mom, he was in his 80’s but very healthy still driving, they decided to put her in a facility with other dementia patients.  When I went to visit her, she was so sad; my uncle was feeding her and telling her how beautiful she was. All she wanted was to be with her family, she would cry it was all so sad and overwhelming.

She died 6 to nine month after she was admitted into the place. My uncle Ross said they didn’t take her out because it was hard to bring her back she wouldn’t want to go…

Not one of her kids took her in, my uncle moved to their oldest daughter’s home. I will never understand why they both couldn’t move in he could have taken care of my Aunt until she died.

It just haunts me that she was right – her last months of life were in a place she didn’t want to be. She was all but 90 lbs. how hard could it be, things could have been arranged.

Maybe I am being too judgmental – and if I wouldn’t have had that conversation with her  my heart probably would not be breaking as we speak.

I love you Aunt Marlene rest in peace.

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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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