Hang On Dear Brother


Today was a good day in as far as it was not snowing the huge amounts promised. I surprised Al when I arrived at the facility. He was upset and in frantic mode. I think I heard one cuss word but ignored it as I knew by opening my mouth I could end up hearing more of that nasty language.

He was looking for his slippers. I don’t know why exactly. He never did put them on. I walked into this chaos. The CNA was looking but she could not find it. Only one was showing. After she gave up I asked Al to please stand up from his recliner and I would move it and look behind it.

I don’t know if I am in partial denial or what but he could not stand. I literally had to stand him and then immediately his knees buckled. Eventually I had him sitting on his walker, moved the recliner and there the slipper was. He put it with the other one and that was that.

He had an unexpected visitor. I could tell when I looked into the visitor’s eyes that he was totally shocked to see me. Where else would I be? Down in the lounge watching television? It was a bad relative. I played my cool since Al was not doing much but letting his mouth hang open. I don’t think Al knew quite what to think.

The chat was calm I would say. Al didn’t talk much, but he has been in too much pain for visitors. I think he tolerates me because I bring him goodie treats. LOL There have been enough complaints about his pain that the doctor was notified. Al’s pain medications were upped. I want him to be in as little as pain as possible. On the other hand these pain medications are strong and bad side-effects. It seems these do help after a couple of days getting inside his body.

Al has sharpened up or maybe I should say caught on. He made a comment to me that these pills would only work for a while and then he would be back in pain. I silently agreed knowing full well that this nasty old Parkinson’s is just going to have its way with my brother.

I met today with the Social Director and the lady who came from about an hour a way. I was not familiar with Medicaid nor all the different avenues that this program has to offer. I listened intently to all that was said and the lady Anita, asked me which route I wanted to pursue.  I looked at the S.S.D and she spoke for me.

She told Anita that she didn’t want to close doors for Al. She wanted all of them open. The only thing I really understood is when an opening comes available at a group home it seems he can go. It can take a while or months. I could help speed it along by allowing him to be placed in a group home somewhere in Indiana and then when an opening was here in our city, he could be transferred. I didn’t know what to think about that. He could end up being the shortest distance an hour, or he could be up to five hours a way.

First I hate to drive. I always have. Going just an hour a way is enough for my knuckles to be red from gripping  the steering wheel. I talked to Al about it and he didn’t say much. The other option is some sort of Medicaid Waiver. This would allow Al to come back home.

He would get forty hours a week of help from different programs at Medicaid’s expense. He would have his bathing and anything he needed done for him. He would also be able to go to a day program here in town Monday through Friday and be home in the evenings and at night-time.

I don’t mind that myself. Al didn’t say too much except he could be with his coke things again. All he cared about was the word day program and friends. He has a lot of friends at this day program here in town. I could never let him go before because he was not Medicaid.

There is too much that I am confused about. I do agree with the S.S. D. though. Let’s keep as many doors open as possible. Let’s try all the routes and see what comes through. All I know is Al is becoming depressed. He is sad too often and it is so foolish for him to have to feel this way. It is because he is ignored. It is because he has no one his age. Residents don’t talk to him. Staff gets involved by the policies and medications and meals.

A human needs touched and talked to and to know they are cared about. We all need this. He is in pain and he is sad. I don’t want him drowning in depression so I am talking to Al about everything I hear. I want him out of there as quickly and safely as possible for him. I want to hear him laugh again and see the smiles.alvin at fireworks

Dear brother I love you so

You and I are no longer together

But you are constantly on my mind

And in my heart each day

I feel your pain as I

Look into your eyes

I see the sadness

Pouring out of your eyes

I am trying to help you

As quickly as I can

Please understand

That this takes time

Please hold on for me

Do not let yourself sink

I never knew it would be like this

Or I would have kept you here with me

I will do my best and with your agreement

I will get you to a happier place

I love you dear brother

I am here for you………………

Terry Shepherd

02/20/2013

31 thoughts on “Hang On Dear Brother

  1. Terry, if you system is anything like it is here, even in a group home Al could be eligible for medicaid waiver. That would allow a personal care aid to bring him home when he and you agree for him to come home for either a few hours, or even a few days. The program that my son is on does this, and they use either their personal car, or the van that the facility uses, which is Al’s case might be better if he winds up in a wheelchair at some time. My son is about an hour away from me and lives in an independent living apartment with nursing staff available, he started out in a group home though. The home that he was in was coed with private rooms, and exercise area, large accessible bathrooms, two or more people on the premises at all times, nursing staff available and they were allowed to have what they wanted in their rooms which were fairly large. If he is eligible for waiver he should be able to have it there as well as at home. It is a personal aide to help him when he needs it the most. God bless you!

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    • so this medicaid waiver is a good thing all around? at first they thought of an apartment where nurses are on staff, but we all shot it down. Al needs help in bathing, he can’t take his own medications. he is getting very forgetful, and he has issues with eating and swallowing. I think the group home is best but i don’t want him far from me to be honest

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  2. Decisions are easier when you know exactly what you’re dealing with..not so many choices that may or may not happen… I don’t think you’d be wise to let him go ‘temporarily’ anywhere in Indiana because once he is placed somewhere I don’t think they’ll be that diligent about looking for another place closer…but I also would tread carefully before bringing him home as much as you want to see him happy there will be those times when no one is there and you might not be able to handle him physically ….. the other comment from loopyloo seems like a good option..Diane

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    • i just don’t feel comfortable with him far a way. the one area they are considering is not even safe in the town itself, so i would b nervous not only driving but going there. there will come a time when i want him home when he gets really bad. i have feelings pro and con with him coming home. i just don’t know the answers. I am going to be doing a lot of praying

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  3. Dear Terry, This is so sad. I have twice been confronted with the decision you now have to make. Both my Dad (Alzheimers) and Vic stayed at home until their passing. I am grateful for the time that I got to spend with them. I am grateful that they lived and died surrounded by our love. I had a caregiver for my Dad and Hospice looked after both. Hospice allows symptom control…Al is never going to get better so what if he becomes addicted to pain meds? Hospice will manage the constipation and nausea that comes with high dosages of opiates. Good luck with the decision. It is hard!! Your love for your brother pours out of your posts. Hugs

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    • it sounds like you had difficult decisions to make also. It never gets easier does it? it just sometimes seems so over whelming. trying so hard to make the right decisions, letting Al know as much as possible and yet fearing his lack of understanding. it is a lot. thank you for your comment. it is true, why worry about the addiction. he isn’t going to get better so why not feel less pain……..

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  4. Terry there are so many things to consider before you bring your brother home permanently. I was the sole care giver for six years for my father who suffered with PD. The biggest is the personal care. The cleaning after the bathroom and changing soiled clothes. You must also be prepared for the fact that as the PD progresses there WILL be falls. Are you able to pick him up off the ground? Are you able to change his linens while he is still in the bed? I know that you mentioned care givers 8 hours a day but that is only 1/3 of the day. I admire you for what you want to do for your brother but please be realistic about what you CAN do for him. Be strong.

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    • I have taken care of him for six years, but at this point, the only reason I will bring him home other than issues I can not control, is when he gets so ill that I feel his time is close. I want him with me when he is at that point, not in a strange bed or room. I love your comment because it shows me that you have a caring heart and a loving soul. thank u so much for being here with me

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      • It is a difficult road and you are handling it admirably. I fully understand you wanting him home when the time comes. Hospice care is unbelievable and pretty good at pain management. I actually didn’t call hospice until two hours AFTER Daddy had passed. All the pain meds were already here and it afforded us the opportunity to experience this glorious event privately. I’m not sure but I think the title of the post was One Last Time.where I chronicled his passing. Terry it was a beautiful thing to be a part of.

        Here is my email–edeeb75@yahoo.com

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  5. My prayers continue. I am trusting the Lord will lead and guide you each day as these decisions are made. Keep in mind, there is only so much you can do… you have to work within the governmental system so do all you can … but do not hold yourself responsible for that which you cannot control. It is an easy thing to do when you love someone and desire to “make everything better”. Lord bless you Terry. One day at a time.

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    • thank you. There are many working for Al now instead of just me. I want the best for him. I don’t feel I could do a good job if he came home. He has a lot of needs. In my thoughts I am thinking end of life, then I would bring him home no matter what. I want him here surrounded by his coke collection and me. I am praying the group home works and quickly, as I see so much of my brother dying from being alone too much

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