Hospice a Difficult Decision

I am having a lot of problems remembering simple things – atHospice - comfort care night I cannot sleep so that is no help. I finally made the decision to put Aziz on hospice. The nurse will be coming over tonight, so I can sign the paperwork.

Yesterday was not so good; my back was hurting and I was very down and frustrated.

Trying to get my husband out of bed was hard. He just didn’t understand what he needed to do.

He is pulling back instead of letting me help him sit up, so much resistance. He thinks he is doing what he needs to do. It makes me so sad.

Now that I have decided to put him on hospice, he will be getting the equipment he needs, and I will be getting more help. I really need the help…

We are going to call it comfort care; it is so much better and doesn’t sound like I am putting him on death row… That’s how I feel…

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Good and Bad Days

Good and bad days – seems to be the order of the day. For a good week or so I really thought I was not going to be able to take care of my husband at home. He couldn’t walk, and I would push him good and bad days have Faitharound on his walker (with a seat). That wasn’t the scary part; he would actually look like he was becoming catatonic and buckled, no matter how I tried to get a response I couldn’t. Usually small periods of time but there was an incident when he was out longer I almost wanted to call 911.

I don’t want to get doctors involved that don’t know his history – it is really dangerous and can actually kill him if they give him drugs for Alzheimer’s instead of Lewy Body. They are both dementia but are different in some ways including how the brain reacts to chemicals.

I took his blood pressure and it was low so I took him off his blood pressure medication. Have not had many incidences since – maybe that is what it is and we dodged a bullet.


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Fear of the Unknown

I have an incomprehensible fear I cannot explain. Fear of Fear of loss the unknown, living life without my husband, not knowing what to do with my life.

My husband is bigger than life its self; he fills a room with his energy and even now that he is so sick it cannot be ignored.

Always on the go not a lazy bone in his body – now with his illness, it can be a problem he is so antsy and cannot stay still, wanting to get up and go to work, go home, see his mother. The problem stems from the fact his is retired, is home and his mother passed away many years ago.

Dementia is such a cruel thing and along with Parkinson’s it is a double whammy – in the beginning, I would have to take him out and drive him around and come back home then he would be satisfied. Now that he is having trouble getting around that hasn’t been so easy. Usually, I can divert his attention.

I know many people are going through this or have and only those of us who have had this challenge can really understand what it does to our spirit, body and soul. This realization doesn’t really stop me from feeling alone.

No one can stop this, and no one can make it better…

I have to go through the pain to get to the other side – it is excruciating .


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