Update About Al

I have had a few calls in the past couple of days from nurses that care for Al. It seems that his gentle attitude towards authority has taken a different path. It bothers me but I refuse to believe that it is anything lmore than Parkinson’s Disease changing him. Al could pull the wool over my eyes pretty easily, but one thing he never did to me was yell at me.

Now I am hearing he is telling the nurses off and has little if any patience when it comes to his needs. His pains are becoming increasingly more and more present. The pain medications that he has been taking are no longer working.

His family doctor has fought very hard to not give Al any stronger medications. He is already on the strongest pain medications the pharmacies carry, but he can go up in dosage amounts. The reason the doctor fights it is to keep Al walking.

He and I have a different view on this. The doctor looks at it from a medical stand point. Walk walk, keep strong, keep independent.

I look at it as it is sister and compassionate human being. There comes a  point where you reach the end of the road as far as pain goes. It is supposed to get worse. It can not get better. Al has had so much therapy on his legs and knees he is worn down. The bakers cyst that is attached to the back bone of his knee is causing him pain also. Two different specialists told me and Al that he is to stay off of his legs. They refuse to operate and take the cyst off because the therapy to heal from the surgery is far more than Al can physically handle.

Now the therapy department looks at Al from a Parkinson’s view. Keep him walking. Well, I am slightly confused, because in two months of being in the facility, Al can barely walk. I am not saying it is all of the therapy that was pushed on Al. Everyone thought they were doing what was best for Al.

Al is a fighter and yet he is losing. He will because of his lack of mentality walk with every effort he can muster so he rides in the wheel chair less and less, but it is killing him faster and faster pushing him into a wheel chair or bed.

Now after too many reports given to me, I have been informed and asked my opinion on the nurses getting a hold of the doctor and demanding he give Al an increase of his medications.

I can only look at this one way. He is my baby brother. He is in so much pain. He is now having trouble swallowing. He states that it feels like something is stuck in his throat all of the time. The neuro  doctor thinks his throat muscle is becoming weak. His speaking has turned from individual words to one big rambling. Nurses and me are all having trouble understanding him.

It is a fact that he is in pain. It is a fact that he will not improve. I have voted for the increase of his dosages on his pain medications versus the pain level he is suffering through. I would rather have my brother in a wheel chair than suffering to the point he is telling the nurses off from so much agitation of getting no relief.

This was a very difficult decision for me to make, but I look at Al as his heart and neuro doctors do. Palliative care, comfort no more big goals for improvement. I just want him to be calm and happy as he and I walk through this journey.

Am I wrong? Am I being selfish? Maybe you think so, but I love him, and I hate seeing him suffer for something that will not get better. I don’t know how long God will keep him here, but I don’t want him to hurt on his journey to heaven.

Al, Pain & Me

I went to see Al this morning, and he was not having a good day. I stayed about an hour and a half, while he went through some deep heat therapy. His legs were in great pain and he was in freezing modes today.

The therapists and I could not get much out of him today, as the pain was bigger than the day. He even asked me to go get the nurse for some pain medications. The therapy has stopped for Al, as far as the physical therapy. The professionals say there is no more that can be done for his legs any longer, but when they see Al struggling to walk or his legs buckling, they haul him into the therapy room and use the deep heat to try to loosen up the nasty Parkinson’s.

I left him when I walked him down to the lunch room, and I saw three two-handled cups sitting there for him a long with weighted silverware. I am so happy they are having him use these, as the last time I took him out to eat, he could barely lift the glass to his mouth, and struggled to use a straw.

I am just amazed at how Parkinson’s can move along so quickly, almost like week to week you see changes.

I have had so much good advice from all of you on here about me. I have just been so far down in the dumps, I can barely climb out. Everything makes me cry, the dog is causing me more grief than pleasure. I just don’t think it was probably good timing getting such a young pup at this time.

I decided that I had to do something. I am afraid to remain like this in this stage, for fear I will slip into some depression and I want to fight it if I can, so this morning, for the first time in months, I put make-up on. I looked in the mirror and asked, is this really you?

After leaving Al in the pain that he was, my heart felt so much lower than ever, I got in my car and the car or God took over, or something grabbed a hold of me, and said press on young lady, you have a life to live, now get out there! I am sure it was my own self scolding me, but anyways, my car went to the beauty shop, parked, and went in, and when I came out, I looked like this!

It has helped some, I am back to my down feeling, but some good happened today also, so I am  hopeful.

Where Is My Strength

I am usually so strong, so I can hardly believe I feel so weak and tired. It is only 7:30pm, and I have hours to go before I can go to bed, since Al stays awake so long from his tremors. I sometimes think that it is also partly a habit by now, that his eyes do not want to close until 3:30am. So I will be safe and say it is a mixture of the two.

It was a busy, busy day. No, I didn’t have to clean in the house. I did find the minutes to do a load of Al’s laundry since we changed beds out this morning, and I have just now folded them.

Thanks to so many prayers, my head no longer hurts, and my shoulders do not feel too much pain, but my eyes are so droopy. Is this due to stress or the day of visitors, or maybe just both.

I want to apologize for not responding to too many blog comments or read too many today. Every time I sit down to the PC, my eyes get weary and fuzzy from lack of sleep.

I read two blogs that spoke of me and Al, so I reblogged them so you could read them also. The one was the visit from the blogger friend, who came here to meet Al and me  yesterday, and the other is a very nice man who talked about me being so strong.

Guilt sort of came over me after reading his remarks, as today, I don’t feel the strength at all. I feel like I have worked in the fields of a slave owner. I am going to lay down on the couch out here where Al is also lying on the opposite end of the wrap-a-round, and I hope Al forgives me, because I know I will be out. I should not do that, but I am hoping, that since I am a light sleeper, I will hear him moving, or trying to get up.

Everyone showed up today, the nurse, occupational therapist, physical therapist, and the bed company, along with a nice surprise of my granddaughter and daughter-in-law. I tried very hard to turn my head when I had to yawn. LOL

I had made a batch of potato soup today during the breaks of visitors. I had made a white sauce and had cubed potatoes, bacon, fresh sliced carrots and many spices. It was waiting for us for supper. Al said he wasn’t very hungry, and I begged him to eat a little, which he finally did.

I hate to see him lose weight, as he has already lost 53 pounds, so I told him a big thank-you for eating a small bowl of it. I feel so bad for him. He has asked many questions today, which I expected. He was told to put his canes into retirement, and another walker was sent out, so now he has two. One for bare floors and one for carpets. This is really confusing to him, but I just kept saying all day, everyone cares about you so much, we all just want to make sure we do our best to not let you fall. I think I must have said it at least 20 times.

When supper was over, I cleaned up the mess, and placed the left-overs in the refrigerator, and pushed the magic button on the dish washer. Thank-you Ms dishwasher, for not making me stand here tonight.

The tears are fifty per cent gone now and the house is quiet except for the dishwasher and Jeopardy, so I am getting off of here. I am so sorry to all, but I can not stay awake any longer.

We Both Smiled Today

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My brother got a box from a blogger today, and inside was this hat. Now although, I know it is maybe not meant to be worn, and it is definitely too small, he has had it on since he opened the box early this evening. I took him to supper and he wore it and asked everyone he saw that worked there if they liked it. He would say to each one, see my hat? do you like it? It was so cute. He is still wearing it.

The home health care nurse came today, and there was a lot of questions to ask Al and me. Al cried because his mind could not keep up, and I think the dementia is getting more bold, and making itself at home here, as Al did not know any of the simple answers, except when his birthday was.

In the end, Al will receive a shower three times weekly, a physical therapist will be here weekly to try to help Al’s weak legs, and a Speech therapist will also be here weekly, to try to help with Al’s throat muscles. He is choking and coughing more and more as he eats and drinks.

It looks like a lot of attention will be spent with him and on him for a while. I may even be able to sneak away and get groceries. I am so thankful and shook her hand as she left, and Al cried, and told her how bad he hurt, and he wanted to die.

So all in all it was not a bad day. Al’s medications almost got messed up because he slept in until almost 11am. He had a terrible night with his tremors, pains and nightmares, but finally he got up. We just moved the times of doses of medications up a little and all worked out. In the end we each smiled today, just at different times.

 

Why Am I Always So Ditzey?

Boardwalk

Two days a go, the new caregiver arrived three minutes late, and Al started fidgeting in his seat. He just knew she was not going to show up like others had not in the past, but she did come, and he smiled in relief.

The two of them spent some time chatting and then she took him to his bathroom and gave him his shower. That seemed to go alright with no problems. The problem arose when Al came back out here to the living room, like all of his other routine days and he just wanted to sit and watch television.

Here, he had the opportunity to be pampered and spoiled, and he wanted to watch the boob tube. She prodded him with different questions, and finally got him  up, because she asked him to show her his coca cola collection. He did this, but I could tell he would rather stay on the couch.

Soon the two of them were back out here and he returned to his favorite position of lying down, and dozing off. I think one of his pain medications is the culprit for this dozing off, but am not sure, as he does it also in the early evenings after supper too. She sat there, and the room became stagnant with no one really talking but the television.

At lunch time, she followed us to Dairy Queen, where Al wanted to go because they still have the blizzards on sale. After lunch was over, she and I talked, well, I did most of the talking, I guess.

I told her I felt embarrassed because I figured with someone other than me, he would light up like a Christmas star, and shine through much conversation. I suggested that we go from four hours a day down to two, but I could tell  by her face, that she did not like that, she wanted to earn a pay check, which I understood.

I told her that I wanted to drop down, because it was obvious, that he truly didn’t feel well, and I had thought it was me that he went around here with his feelings on his shoulders, and if there was an outing, then we would extend the hours to however long the outing was.

Yesterday, she comes back and on time this day, so no stress for Al. lol She asked if she could take him to the Boardwalk, which is where many people go for walking pleasures. I said yes, if Al felt like going, and he said it was alright with him.

I showed her how to tear the scooter apart, so that she could get it in her trunk, and at 10:30am, the two left. The drive is about two miles from here to get there. When they left, I got out of this house, and actually walked around my addition too. It was nice to be in the sunshine and have no thoughts running through my head but mine.

While I have found someone to come in, there lies another problem, which is the cost. It is quite expensive, even though it is greatly appreciated by the physical help. I had called Medicare about the same time as placing the ad, and there may be a chance that Al could get some physical therapy that would help his weak body, and then maybe, they would also be able to give him a little bit of extra attention to. So, I feel a little funny inside, as I have a caregiver, who doesn’t want to lose her hours, and in order to keep her hours, she takes him for a walk on his scooter for the entire time. When they got home, the battery of the scooter was dead, and Al could barely walk from sitting in the same position for so very long. This was clear to me what her goal was, but Al suffered and collapsed into bed from exhaustion. Then there is maybe some help from Medicare where they would pick up the tab instead of me.

I am confused right now, wanting to do what is right for Al and for me, but wondering how long I can pretend that the four hours each day are really needed, pleasing the caregiver, and then knowing also on the other hand, that Medicare may help with therapy and also pay for this.

Why can’t I be more tough inside? I know that Al paid a  high price being on that scooter for way too long in order for her to get her hours in. So what is my point here? I am confused……..