Gut Wrenching Pain In My Heart

It has been strange around here, Al fell last night. He fell between a base against the wall

Relative direction...

and his recliner. I had put up so much of his collectibles on to shelves, but there were still

several items on the floor, all hiding right where he fell.

He was confused and he did not ring his bell to let me know he was getting up. He has a clock sitting on his table next to his bed, only inches from his face, but yet he got up, did not put his glasses on nor did he use his walker, and he said that he was going over to the opposite wall of his bed to see what time it is.

An open scratch on his behind, but other than that, nothing happened. I was able to help him get up, but my mind kept switching back to the coca cola glass bottles sitting inches away from where he landed on the floor. He landed on a musical reindeer, that stood about a foot tall and smashed it to pieces. The bottles were sitting directly beside the reindeer.

After I checked his body out for red marks, blood and bruises, and got him safely seated, I picked up one of the bottles and showed it to him, and I told him how lucky he was because the way he fell, he could have taken a bottle right through his eye.

He started to cry and said he does everything wrong, which makes me so angry, because I never tell him he is wrong. I do que him a lot, guide him in the right directions of different things, but do not ridicule him.

He was very quiet the rest of the night, as he usually is, when he falls. I believe he gets shaken up mentally when this happens. He remained quiet today also, he even without permission or asking me to help, leaned over and moved those items behind the recliner, which is what I have been trying to do for weeks. I told him that he should have at least let me know he was going to do it, or have me help, because leaning over forward, is asking for a fall. He cried again.

This afternoon the therapist came for her last visit, and also the nurse came. She has two more visits to go then all home health care is done. After being fairly quiet today, Al let loose when the two ladies were here.

His tremors were a wreck, flying all over and rapid movements. He burst into tears, and he told them how he was stupid and a retard, and I did not want him here, and he was a failure, and I wanted all of his stuff out of his room .

None of this is true. His being down on himself is his feelings alone, and no one else’s. I do not want his room empty, he is mad because we are rearranging things in his room, and Al doesn’t do well with change.

Both the nurse and therapist tried to calm him down, but he was tuning everyone out but himself. They tried some exercises to calm  his tremors, but he wasn’t budging from  his frame of mind.

Then I made the mistake or maybe a blessing in disguise. I stood up and said,I can’t take this anymore. It has got to stop, please stop. The tears, the arguing, the lack of ability to comprehend anymore what I am saying!! I just want to run and hide!!

What had I said? What had I done? I clamped my hand over my mouth, and sat back down. I had let my feelings out of their hiding place and the professionals had seen it. They had seen my frustrations and tiredness.

The nurse looked at me and said, I was wondering how long you were going to be able to pull this off. I would have been pulling my hair out a long time ago. We both so admire you for what you have been doing and for how long you have been doing it, but don’t you think it is time to actually consider placement for him, where he can get more therapy and be around other people?

Instead of waiting for my answer, Al is over on the couch screaming that I want the house for me alone, and that I don’t love him etc. This is what happens each time Al and I try to talk about maybe finding a better place for him. His guilt words being thrown at me like poison darts, always make me crawl back in my hole and keep me quiet.

Not this time, the nurse and the therapist took over the situation while I sat there in surface shock, and they started talking to him about how much happier he would be living in a home where there were nurses and staff to be with him when he fell, and the games that went on inside, and all the new friends. He began to cry, and then so did I, and then the ladies followed. Pretty quickly it turned into a pool of tears right on the carpet.

Al finally broke down and said he might be happy living in a rehab home, as the ladies called it. The therapist wrote an email to a facility here in our home town to try to get information on what had to be done in Al’s special circumstances.

By now, it has been two hours since they have left, and my heart is in my big toe. I am feeling the guilt no matter how I try to slap it away. I failed him, just like his dad did, no I didn’t, yes you did. I walked into his room just now and looked at him to see if he was alright, and instantly tried to imagine what it would be like to not have him living here, and I turned around and left.

I literally forced myself to think about how I could go back to work, and I could go pick up Al and take him to lunch, and he would actually be glad to see me and we would laugh and chat, bu then my thoughts would come instantly back to you failed him. No I didn’t.

I am not sure if I can do this, I don’t know if I can get rid of the guilt and let him go, even knowing he may be better off. Maybe this won’t work out anyways. I have tried to look into it before, and always got a no, or he is not on Medicaid, so no, but maybe it will work out………………

I need to, no, I have to keep looking straight at Al, and how many times has he fallen, and his confusion, and the EMS’s having to come pick him up off the floor, and his tears, and his sadness. I am thinking of me and not him.

Dad died, and that was it, over. I had no one asking me for permission to let it happen, it just happened without my consent. This to me is ten times worse, I am being asked.


very important reminders

Originally posted on Let's Talk About Family:

When I saw dad today, he was sitting in the lobby as he often is. The Assisted Living Facility had full power today. I was told the electricity was restored yesterday. I don’t know if dad even realized it had been out as the generator supplied enough to have some lights in every room and to run the kitchen and lobby lights.

I had brought dad more Depends and brought those down to his room. I always check around and saw he left me a note on a napkin. It said: “Provolone, Pretzels, Pepsi”. I put the napkin in my purse to remind me while I was at the store.

While my family seems to have escaped most of the Superstorm’s effects, others in our region have not been as lucky. There are still some families without power here in our town and the Red Cross set up a several shelters…

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Daily Prompt/The Daily Post

Daily Prompt

Illustration of the Parkinson disease by Sir W...

Illustration of the Parkinson disease by Sir William Richard Gowers from A Manual of Diseases of the Nervous System in 1886 showing the characteristic posture of PD patients (Photo credit: Wikipedia)

by Michelle w. on November 1, 2012

When was the last time you felt really, truly lonely?

Last night, actually I felt lonely, right as I was lying down to go to sleep. I try so hard to not look at myself as a big pity party with only entertaining one guest, myself, and I am not even sure if I qualify for the word pity.

Caring for my brother, who has been in my care almost five years. This will be five years in January 2013. Dealing with mentally impairment, heart attacks and angina, and now, Parkinson’s Disease. Life  becomes over whelming most of the time.

It is described as a little snow ball rolling down the hills until it becomes so large, the city can see it if they look in this direction. It started out, that I was able to still work while Al, my brother was ill. He worked also, at a linen company, sorting mops. It was a nasty job, just plain nasty, and in my eyes, it was the bottom of the pit job, and he never climbed out of it, but with his mentality, he saw it as a paycheck and nothing more, nothing less. He did this for nine years, with very little pay increase.

When January rolled around, from which we had buried our father only three weeks prior, Al had a heart attack. I was still able to work a little while longer. I was and am still considered a professional caregiver, and I was at the time, caring for an elderly couple on the weekends as a live in. Al was recovering nicely, but when it came time to go back to work, he could not pull his weight in work.

The company was so good to him, even though he made little money or given nice raises. They cared about him. They let him return three times, but then they called me into the office, and with tears in their eyes, they let me know they had to let him go, because although they liked him very much, he could not do even fifty percent of the quota.

This changed things. I retired from my job and started caring for Al. With no money coming in  for him, and no job, and not really having any idea how to run a house hold, it took my entire waking hours to make everything work.

From the heart attack came excessive mental baggage of not understanding why he could not do the things he used to do, then more heart problems, angina. We dealt with this for some time and  even had to move, because walking stairs to his bedroom was too much for him.

Now we have been dealing with the progressive Parkinson’s for two years, and for him, it has sped very fast from the beginning, now leaving him in the fifth stage. You deal with many issues with Parkinson’. Freezing up of legs,tremors, choking, tears, unable to control urine, constipation, scooters, walkers, canes, many doctor’s appointments with different specialists. The emotional part is probably the worst of the disease. Hearing him constantly talk about wanting to die, why isn’t God letting him die, hearing he is sick and the disease is destroying him.

A part of his brain has shut down. The part that lets you see joy and happiness, so mostly Al sees only himself, and his pain, which is a constant in his life. I can sit here and listen, help, watch, guide, explain, but at the end of the day, Parkinson’s will win this game, and Al and I will lose.

So at the end of the day when I have him safely tucked in bed, and he is nice and dry, and his television is turned on, I wait for his tremors to settle down from his night-time medications, and by the time he is falling asleep, it is around three am, and from midnite until three am, I have the open opportunity to lie in bed awake and listening, wishing I was not walking through this journey alone, and I get very lonely

What The Teacher Reported

A teacher actually reported this. It was so cute, I wanted to share this with you. Thank-you Shona!


This was actually reported by a teacher ……

Cover of "Grandma and Grandpa (Out-and-Ab...

A teacher asked her young pupils to write an essay on
How they spent their holiday away from school.

One child wrote the following:

We always used to spend the holidays with Grandma and Grandpa.
They used to live in a big brick house but Grandpa got retarded and they moved to Batemans Bay where everyone lives in nice little houses, and so they don’t have to mow the grass anymore!
They ride around on their bicycles and scooters and wear name tags because they don’t know who they are anymore.
They go to a building called a wreck centre, but they must have got it fixed because it is all okay now.
They do exercises there, but they don’t do them very Well.
There is a swimming pool too, but they all jump up and down in it with hats on.
At their gate, there is a doll house with a little old man sitting in it.
He Watches all day so nobody can escape. Sometimes they sneak out, and go cruising in their golf carts!
Nobody there cooks, they just eat out. And, they eat the same thing every night — early birds..
Some of the people can’t get out past the man in the doll house.
The ones who do get out, bring food back to the wrecked centre for pot luck.
My Grandma says that Grandpa worked all his life to earn his retardment and says I should work hard so I can be retarded someday too.
When I earn my retardment, I want to be the man in the doll house.
Then I will Let people out, so they can visit their grandchildren.