It has been a little nerve-wracking and a little stressful here since last night. Al has taken to talking on a regular basis again. Oh, it’s a good thing to hear his voice again, let me assure you. There are problems with it though.
It seems like feelings and thoughts he has had for some time have now surfaced. He wants to make sure everything he has not been able to get across to me and others are going to be expelled before he can no longer speak again.
He has complained, well I don’t know if that is exactly the right word. So I will say he has announced that his arm hurts. He has told me and the nurse that we are trying to break his arm.
Now this comes from his one arm trying to lock-up. His head is locked in position. His one leg is locked on its side permanently. We don’t want to have his arm locked too. It is sliding over across his belly and it doesn’t want to move.
This would make it very hard to dress him or to wash him. The nurse explained to him that we need to keep that muscle from tightening up, but Al just looks at her and says with serious blue eyes, ” You are just trying to break my arm.”
Then there is the issue of the leg lying on its side. I can lift the leg very carefully. I am always afraid to even lift it for fear it will snap at the knee-joint. Al isn’t satisfied with my movement of that. He wants it to lay right side up like his other leg, but I can’t get it to do that anymore.
He has had a big issue with the ear cartilage for a few weeks now. The nurse had been administrating medications for it all this time. It has a duoderm on it that helps it to heal. Once again this problem stems from his head being locked on its side touching his shoulder.
All we heard is his ear hurts and it is sticking. It is true that the heat from his body makes the special band-aid get sticky and gooey and this bothers Al. The ear is healed but the nurse told him today that she wants to continue to keep a new taping there to protect his ear from being re-injured.
Al wanted nothing to do with it tonight. I explained what could happen a couple of times but he didn’t stop talking. Finally I gave in and took it off. Then he yelled at me because the tape pulled his hair.
I just stood there and stared at him. I didn’t want to say anything that I would regret. I felt bad for him being in this predicament and yet the constant complaining was turning my hair more grey.
He went back and forth between each ache and pain and I pulled up a chair and sat down beside him. I took his hand in mine and said, ” Look bud, I am doing the very best I can. I feel awful that you are having to be in this pain. I wish I could do more but the only one that can fix everything is God and we need to continue to let him hear our prayers.”
Al looked at me and his eyes became watery. This softened my heart more than ever. A feeling of total helplessness came over me. I could do no more for my brother than what I was doing. I believe Al knows this but it doesn’t ease his pain much.
I got Al as comfortable as possible. I had made some chocolate pudding mixed with cool whip. He had some for supper with a syringe full of ice-water. I repositioned him and told him to please try to get some sleep.
As I was leaving the room Al began mumbling again. I knew I could not do another thing so I kept on walking out. I did the supper dishes and then went back and checked on him again. He was sound asleep with that one half-locked arm laying across his stomach, right where it wasn’t supposed to be. I sighed and then smiled. At least he was asleep and not able to feel his pain.
hey sweetie you have to remember that mentally Al is not really there any more and what he is saying is a man in his last days expressing the only thing he can feel and that is pain and being uncomfortable.
It is hard not to get angry or irritated as we are human and have feelings.
We caregivers are very sensitive people.
We show that by being so aware of the needs of the one we are caring for.
Please know that within his heart and soul Al loves you and he would never say anything to hurt you.
You are right and I think of it, but later, after I walk out of his room frustrated
This is a very frustrating time you are going through and it is normal to be frustrated and over whelmed.
Hugs and remember you are only human.
Every day is so unpredictable for you – so hard.
Yes, it is messing me up too
So difficult, Terry. I don’t suppose there is any explaining as to why he is suddenly talking again. I do know that sometimes a dying person can seem to perk up shortly before he settles into the final stages. You know I’m praying for you both. Wish I could be there for you in person.
The only thing I could figure out is that connection for talking is not completely dead yet. Other than that, you may be right. Thanks my friend
God works in mysterious ways and I definitely feel He is at work in this process. Just humor him with regard to his complaints and tell him how much you love him as often as you have the opportunity. This too shall pass just as quickly as it came on.
Praying for you and Al…may God hold you in his arms and guide your steps.
I never thought of that Linda. This could b a phase, thanks for letting me know. hugs
Wow! Speechless as usual when I read your day to day events. I was thinking about the word I received on Sunday at church which was Grace. You are graced to be with your brother and to be his life line before he leaves his mortal body.
Thank you so much. Grace is such a beautiful word even without the meaning of it. Hugs
Grace is the unmerited and unwarranted favor of God. To me it’s Gods love in action.
You are doing your best and Al knows it, nice that he talks a bit more to you and you can again ensure him about everything!
Yes for the most part hearing him talk is good
Pain makes us very grumpy and Al is suffering so much. Sadly you are the only one there for him to express his discomfort to so you are taking the brunt of it. I’m so sorry.
It sounds as though Al is is ‘there’ at times. He complains to you but still a part of him does understand and that part surfaces and sinks, causing you even more stress. I am loathe to advise as I cannot imagine what you are going through, but trust me you are doing so great. So Very Great!
Thanks so much Elaine for being so understanding and comforting
My father who is only 61 has MSA too. Your not alone!!
My father complains every day of his pain, and has a hard time talking, and swallowing… We are not sure what we are going to do when he can no longer talk!
He is on hospice too, but refuses to take medication and is so angry he wants to sit in the dark and be left alone. It’s sad to see someone so depressed And angry. But our hospice nurse says to be glad he throws fits right now and see his personality. As he progresses we won’t be able to know what he’s thinking.
When my brother went from talking to not, we used flash cards, but that didn’t work. We now guess by his schedule. There are times Al can make noise. Sometimes he talks pretty clear but that isn’t often. Now we use the say just one word. From there we guess from what we have heard. The blink for yes works still also. Al was never angry. He did get depressed wondering what he did to get this. Thank you for sharing. I wish you the best through your journey. My advice is always be prepared for sudden changes. We have that here sometimes from hour to hour. Hugs my friend