Tag Archives: Day Program

Take My Love With You When You Know It Is Time

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It is almost one am and I need to get some sleep. But before I can I want to thank you for all of your support and your great friendship. I couldn’t possibly have done any of this without either one.

It has not been a good day. It seems so many changes happen and I just about can’t keep up with them they come so quickly.

Last night I recognized a certain breathing Al was doing. With prior experience taking care of patients nearing the end, the memories swiftly returned as I watched and listened to him. It didn’t stop there.

This morning when I woke him for his shower, he looked at me like he had no idea who I was or where he was. Two ladies appeared at the front door and between them and Al I sat here at my computer in awe as I was forced to hear the rude comments coming from Al’s mouth.

He was angry and mouthy. He was definitely not himself. After the shower was complete, both ladies look exhausted. I knew in that moment the showers were over. It was bed baths from now on. When they brought the topic up for the next shower day, I wasted no time in agreeing with them. I do not want these nice gals getting hurt over Al’s weakness.

Al went off to Day Program as planned but when he arrived home there was no looking up at me as he usually does. No wave from his hand. There was only nothing. The bus driver kept giving me the look as she lowered him to the snowy ground.

I could tell that she wanted to tell me something but could not because Al was right there. I wished her a good weekend and took Al inside to a nice warm living room. I quickly took his outer wear off and looked at his communication book and saw that there had been issues during the day.

The comments were Al was very weak. Two staff had tried to help him with the bathroom duty but Al’s legs didn’t move. The two could not hold up the dead weight and Al slid down to the floor, so they would not drop him.

With extra help they got him back in his chair. He has a blood mark where he was injured and a report was made on this.

I had surprised Al when I went out to get groceries and stopped at his favorite restaurant and picked up supper. I nuked the food and started to feed Al but he wanted nothing to do with it.

It seemed that he was slipping a way from me. No emotions, no movements. I called Hospice and told about the incident from Day Program. She came over and checked him out.

His blood pressure was high. His heart beat was too high. He was not well. She and I looked at each other and we both knew we could not lift him to put him in bed. She called the fire department and within minutes five fire fighters arrived.

I know this is  hard to believe but with one of the guys in charge of removing the wheelchair away once they had Al up, it took all four of the others to put him in bed. When there is dead weight involved, what they weigh in reality seems doubled.

The nurse noticed some changes in his feet. Cold and a little dark. She was so nice. She helped me get Al’s clothing off and get him changed and positioned. Not many nurses do that and I was very appreciative.

When we left his room and we were in the living room she began conversations of what to look for with Al when he is passing. She gave instructions on what to do and who to call once that time was here.

I knew in my heart that Al didn’t have much longer. She told me with the visits Al has had from heaven that I needed to tell Al to take their hand and go.

She then grabbed her things and gave me the biggest hug. I felt like all of you were a part of that hug, it was so big.

After she left I went in and sat with Al. We talked about heaven and I told him the next time he saw mom or dad or grandma to grab their hand and go. I told him he has been a real fighter in this illness. I explained that if things didn’t improve by Monday he would probably not be able to go to Day Program any longer.

I explained that he did a good job all through this and how proud I was of him. I waited and watched him as he tried hard to settle down to sleep. Rhino came in and meowed and I heard Al say ever so softly, ” I will miss you Rhino.” With that Al went to sleep.

I am not scared, and I am not ready, but I know things are going to change again. I am so thankful that I have had the chance to be with Al and that I have Rhino.

Al, I don’t know when your time is going to be, but I love you brother. Take my love with you when you decide it is time to go.

Al and Rhino, Nov 1

 

Happy Thanksgiving

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Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I have had my shower and am sitting here in my warm night-gown and fuzzy slippers. I am waiting for the phone call that will start my day.

The shower girl will be announcing what time she will be here. This fifteen to twenty minutes is almost as important to me in the mornings as talking to God is. Quietness, the sound of Rhino wanting petted and the fans running on the computer.

When that phone rings it will signal me to go get Al up. I will change his brief and assist him in a sitting up position. Then transferring him to his wheelchair and placing him in a good position at his bedside table, I will start his breakfast.

Once he has eaten, I will brush his teeth and shave him. The shower girl will arrive and do her thing, then it is getting Al ready to be bundled up to get on the bus. Already the memories of silence I heard just moments ago will fade into a puff of smoke.

I will then receive a call from the Hospice nurse telling me when she will be arriving at Al’s Day Program. I will armor myself with boots and gloves, warm up my cold car and with grocery list in hand I will once again be placed into the hustle and bustle of people in the grocery stores, all doing the same thing.

It is getting uncomfortable to be around the crowds. I think it is because I spend ninety percent of my time inside our home. After leaving the grocery store I am meeting a lady to pick up an item I purchased.

Driving home, getting the mail, carrying the groceries in and putting them a way, I will look at the clock and take notice of how much free time I have left. I will let out a sigh and grab one last cup of coffee before the glimmer of silence is gone until bedtime. You have to love Mondays. Although weekends are the same to me as most of the week days, I hear no doctors or have any meetings or big routines on the weekends. I kind of like that.

This will be a busy week for anyone celebrating Thanksgiving with families. I want to wish all of you that will be traveling a safe trip, yummy food, good conversation and a happy Thanksgiving.

Thanksgiving-Turkey-Dinner

Improving Tuesday

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Well, well, well, Friday, Saturday, Sunday, Monday and today is improving Tuesday. Yes, Al is more aware and awake. He has eaten for me all day. He plans on going to Day Program tomorrow which means I can get some fresh air and go to the grocery store.

He is still very weak, he continues to have his treacherous tremors but his spirit is brighter. He has sat in his recliner two different times for short periods.

I am sighing a long breath of stale air where I had been hanging on to every breath I took wondering what was coming next.

It looks like we are on an up swing and I don’t care how long it last as long as he is content each moment. When the bad day comes again, I can look back at Improving Tuesday.

We do have a bigger problem though since he is definitely weaker. This is not a temporary thing. The new weakness is here to stay, partly due to the illness, and partly due to the increase of pain medications.

Come here, come real close, I want to ask you a gentle question. Do you have a weak stomach? If you do you may not want to read further, but if you can take it can I discuss the word POOP with you?

I have your permission? You can handle it? Alright then, here is the situation. Have you ever sat for minutes waiting, reading your magazines, smoking a cigarette, more waiting and nothing happens on the Big John?constipation-3

You read some more, you relax, you push until your eyes bug out and your face looks sunburned. Eventually you score, victory is yours. You smile, you won, another battle is over.

Well for Al those muscles that you and I use don’t work anymore. He takes all sorts of medicines to help but help doesn’t come.

Now that he is weaker those muscles are weaker also. He is also hard to stand for the Day Program people too because of  his weakness.

The terrible thing about M.S.A. is that his mind is in tact. He knows it is wrong to do the deed in his brief so he is fighting it. I have been speaking to him on and off all day about how it may be time for him to go in his brief because his body can’t make the trip to the toilet.

He cries and says he will stink. Of course I pipe  up and say absolutely not. You just say that you need to be changed right now and who ever is with you will run to the bathroom faster than you can say Monkey’s Uncle.

He didn’t think that was funny, but seriously friends, his body can’t get to the bathroom. It is a transfer from bed to wheelchair to toilet to a sitting down position. Then the physical work of making pudding pops, then standing back up transferring to his wheelchair and back into bed.

For a tired body and a weak heart that is a lot of work. Even today Al sitting in his recliner twice for short periods you would have thought he had just carried a bundle of firewood, he was breathing that heavy.

This is one battle that I and the nurses and Day Program have to win in order for Al not to  have another big heart attack.

Alright, that wasn’t too bad of talk was it? Are you sick to your stomach? Should I excuse you so you can leave?

On the bright side a friend of mine sent me the Teddy Bear today. It is the M.S.A. bear that I put on my blogs a lot. It is a sign of hope for a cure so people don’t have to suffer like Al does.M.S.A. logoM.S.A. coverM.S.A badge

A Very Long Day

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11pm at night. Quietness at least for now. I feel so guilty that I have not been on here much the past couple of days, but Al has been so restless.

I have just changed him and rolled him over on his side. I pray that I won’t be up for a third night in a row. I am going to place an ad in the newspaper tomorrow morning. I just can’t do this anymore.

My neck is burning, I am sure it is muscles. I had some sort of spell today. I felt hot all over. I was actually sitting here at the computer and suddenly got hot and felt like I was going to pass out.

I knew I needed to get to the bathroom and splash my face with cold water. On the way there I leaned into the wall a little. I got light-headed. I had been to two doctors this week and my blood pressure was a little high. When I took it here at home it was the same as it was at the doctor.

I just can’t do this alone anymore. As long as he is confused and needs to be rolled so often in bed I need help. Please pray that someone responsible will answer my ad.

So far Al is saying he does not want to go to Day Program tomorrow. It is serious when he said this. I never in my life I thought I would hear those words.

The shower girl will be here tomorrow morning. According to how he is, he will either have a shower or a bed bath, and then I guess we shall know then whether he is going.

If Al is going to remain home I definitely have to have help. I need to get to the grocery store. No one delivers to homes in our area.

I have been working triple time to slow down my mind. I have stayed either with Al today or on the couch lying down. Al never slept all day but then at nine tonight he took a little nap.

I got a call from the Hospice Doctor this evening. I was surprised to receive this on a weekend. He was checking on Al and he definitely told me that the medicines he took Al off of will not shorten his life span, but neither are they doing him any good any longer.

He told me Al should not go to Day Program and I agree, but I am still leaving it up to Al and how he is feeling, but it seems Al is figuring it out all on his own. The doctor told me that each day Al will now become weaker and each time he is made to move around he will suffer more and more.

He stated a weird thing when I really think about it. He said, ” Each day Al is one day closer to dying.” I already knew this. I think doctors and nurses beat around the bush. They have ethics and politeness when sometimes I would rather hear the bold truth, but then again, why. It doesn’t matter. I try to make each day count.

When I roll him it is a huge struggle and I get stressed because I feel like I can’t do it. I know Al knows it is hard because he kept telling me he was sorry. Of course I would feel guilt that I verbalized my groans of pushing and moving and I would tell him it isn’t his fault, that I know if he could help he would for sure.

His tremors just this weekend have curled his toes up bad. He has a large looking hammer toe now from the curling. His arms won’t stay to the side of his body. They repeatedly make their way back to his stomach area.

No matter when I went in to check on him his hands were holding each other and he was beating himself in the stomach from the tremors. I have to wonder if I can get his shoes on him.

With all of the doses of pain medications  no one can seem to get the tremors to stop. I believe in my heart that the only one who can stop those tremors is God.

I don’t know the time but I am thankful that I have put up our Christmas Tree. I told Al I was going to put up white lights for him in his bedroom today but I never made it to that. Hopefully tomorrow.

I let the house go today. I fixed a meal. I cooked chicken legs and de-boned them. I cooked noodles in the broth and made instant mashed potatoes. I also made a pudding for Al. I took the seasonal pumpkin pie spice Jello pudding mix and added beaten cream cheese and a container of cool-whip, then enough milk to make it the consistency he needed.

He ate one doughnut yesterday. Today he ate about five bites of pudding two different times. He also ate about a fourth of cup of noodles. He didn’t eat much but he ate more than yesterday. I could hear his tummy growling but he is barely eating.

Well the day is over, hopefully. I am headed to bed to get some much-needed sleep. Keep us in your prayers for a helper to arrive. Hugs to all of you for your love, friendship and support. I couldn’t do it without the emails, phone calls, and comments.beautiful-christmas-scene-christmas-wallpaper.jpg