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Ray and I are both tired


swilkinson

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I hate going in to the hospital every day. It is easier in the car although there are a lot of road works between here and Gosford. I try to work out when there will be less traffic but sometimes get it wrong…lol. Today Trev took the car to get a new battery and a service before it is re-registered so I went on the bus. Not an ideal day for it as it was cold and windy.

 

Ray has won his battle with the chest infection but still has the cough so the speech therapist is working in that. He is still on level two fluids so off the thickest ones now. The physiotherapists came to walk him today and his walking is terrible, they used a rollator for him to hold onto while they propelled him forward using a gait belt. It was intended to focus him forward but the cornering was so erratic I thought they were going to drop him and another nurse rushed in to help. He did walk as far as the door, maybe 20 steps all up, so that was something.

 

He has slipped into a dependent pattern. One of the aides fed him his lunch by the spoonful until another one came in to tell her he must feed himself with her looking on. They are trying to get him to be aware of his left side again as once more he sees only the right side of his nose. His dangling left arm they are putting down to “locked-in syndrome” saying that the brain is isolating it to protect the damaged area. This means he may lose elbow and wrist movement if he doesn’t use it soon. I find all of this very scary.

 

I had two reports from visitors yesterday, my sister wrote on Facebook that when she visited he was in “good health and good spirits” and my sister-in-law rang to say that when his brother visited last night he was very sick, couldn’t hold his head up, had an episode of incontinence, seemed unable to focus and the b-in-law was in tears on the phone. Maybe it is because he hasn’t seen him for three years he noticed the difference?

 

I asked about the staff about the incontinence and there is going to be some effort made to re-teach him to use the urinal. At the moment he is incontinent in both kinds but they are hoping this will improve. They are saying as we all say here it is “early days” yet. I can see that this stroke has taken a lot from him and don’t know if he has the energy to fight back now. We have done this so often now we are both tired of it.

 

I watched him put through an extended version of the mini mental test. He had no idea where he was, the day, the month and the year. His short term memory is obviously gone and yet he was okay with the maths part of the test, could take 7 from 100, 93 etc backwards about six levels, draw the clock face and remembered a simplified address after a few promptings. It is strange what you lose and what you retain after each stroke.

 

The psychologist thinks he will manage the rehab program as she thinks he has the ability to retrain. I think she is a bit optimistic but if they are willing to fund it I am okay with that. Luckily there is a big push to keep people with dementia in their own homes so I can probably get the help I need. We baby boomers are going to take up too much space in care homes if something isn’t done soon. I will be happy not to put him into care and to bring him back here for his sake but seriously not right now.

 

It is really heart wrenching to go in day after day and see him now, with the new droop to his mouth and his unkempt look as the staff let him sit around all day in a hospital gown (incontinence issues). I wonder what they have done with my husband and why I am visiting this old, old man. There are very few glimpses of the Ray of even a few months ago. When I visit, morning or afternoon, he sits and nods off. He is very sleepy and when awake stares into space most of the time now. With the warmth of the room and the emotional strain of watching his struggles with his lunch, with the test, with walking etc I almost fell asleep myself late this afternoon.

 

Ray seems so unaware of his surroundings. He is not able to name where he is or where he normally lives. If I thought he didn’t think of me much before I am sure of it now. His whole body is on slow down and the mind is switched off to what is happening around him. I hope that will change as time goes by.

 

Sorry for my lack of time and concentration here. When things improve I promise I will be back in mind and spirit again. For now my whole focus is on Ray.

8 Comments


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Sue, I'm sorry to hear of Ray's reversal

of progress. You and Ray are in my thoughts and prayers, for you and Ray have and are teaching me so many of life's lessons. God be with both of you.

remembertolaugh, Jeanneibean :cocktail:

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Sue, I just noticed in one of your posts yesterday that Ray has had stroke #6. I'll have to look back and get more details of when. I'm so sorry to hear. It must have hit where Bill's have hit with the exception of math. He can't do any math at all and hasn't since 2004. Same with date, address, etc. It is very difficult to see I know. As you say, I agree that much of what you are seeing is where he is. It's always disheartening to see the way Bill is when he is in the hospital too because he looks so pitiful.

 

Keep the faith sister. God is in control of even this, and He will provide a way through. I'll be praying for your strength and wisdom as you continue to make decisions.

 

Ann

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Sue, You sure are in a rough spot right now. This too will pass and you will see improvement but I know how disheartened you must feel. It is a bit difficult to know how much Dick has lost because his aphasia is so bad but he has lost a lot in the last two months. He too seems to just sit and appear to zone out. I too keep looking for the fellow that was still there a couple months ago. Yesterday was an especially scary one for me because I could get virtually no response from him. On a whim I packed him into the car and carted him around to a couple of my Dr. appointments. I was amazed how improved he was just getting out of the institutional setting. Hopefully Ray too will springback some when his environment is more familiar.

Ruth

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Prayer are coming your way for the strengh that you need. Please be careful with yourself I hate the idea of you being tired and leaving the hospital for you trip home. Also we are praying that Ray inproves and can come home to you soon. Take care Sally

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Sue,

I know that this is a hard time. I will pray that Ray is able to rally a come back. Just take care of yourself. The added trips to the nursing home are tiring also.

 

Ruth

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Sue, I know this is the sixth go-round, but remember what you said to me many months ago, he needs rest. The infection would have taken the best out of him itself, piled on with a stroke, he must be exhausted.

 

Good for the Psychologist. You let her go girl! Take all they will pay for. Amazing his math is so good. That is so high functioning and for Ray, I know, one of his strong points. Good news.

 

I am pleased his family is visiting. From Ray's point of view, he loves them and is happy to see them. From you, take it with a grain of salt. Thank them for taking time to see him and let the rest go. Bruce's best friend, my Executor and his Godson, who saw us this weekend and had the great BBQ, offered to sit with Bruce while I had my medical stuff taken care of. They were to Email their schedules so I could make my appointments. Haven't heard from them since-lol! We go this road with strong, but sparse support.

 

You are lonely, depressed and waiting yet again, for what life is going to hand you and Ray. Take strength in your faith and those around you who truly care and want to help. Please do rest and take a walk on your beach when you won't be blown away by your winter. Sit on the patio, with your tea and just breathe. Know you are in my thoughts and prayers-Debbie

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Sue,

May God Bless both you and Ray. I am crocheting a prayer shawl, and each stitch comes with a prayer for you both. (almost every stitch - my mind wanders a bit). Anyway, just know that there are many, many prayers coming your way.

Sheila

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Dear Sue: I am praying for you and Ray. I wrote a post in the inspiration forum today; try to take time to read it. It is great for all of us. Try to always remember, you are not in charge. Do what you need to and leave the rest to God. He will get you and Ray through this. Hugs, Leah

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