Support Hug Please


al and meToday I started one of my classes and it was so good to talk to other humans that were not ill. After it was over I went to see Al. I needed to take him some pants that I had found plus visit.

The Social Services found me and did a check on Al’s room. He had four cars there that were collectibles and of value. She made me take them home. It broke my heart because I knew that he enjoyed looking at them. She and I finished and then I was getting ready to go back down to sit with him while he finished his lunch.

I saw Al coming down the hall all bent over but using his walker. He was frustrated and mumbling but I could hear the wicked things coming out of his mouth. I went to meet him and the first thing he was upset about was the wet floors and the wet floor sign. He ranted and raved about them being in his way. He said they didn’t care if he fell or not.

The real problem I discovered was that he had to go potty. He was so afraid that he was going to have an accident. I told him he may want to consider using the bathroom before he went to a meal, and he said he did. He was also concerned that if he wet himself, people would laugh. I explained about him wearing his brief and that no one would see anything, and he could just change briefs.

He was mad and irritated. He cried all the way back down to the dining room. He and I saw a lady beginning to take his meal and I sort of yelled a head letting her know he was coming back to finish it. She stopped and did not take it. He cried some more and tried to claim she wanted to throw his meal a way and wanted him to starve. I tried talking to him, saying we saved it and then an activities director butted in and told Al,” You should have said something that you were coming back”. This made Al cry even harder and he said he did everything wrong. I explained to the director that with Al’s mentality, he only thinks for the moment. I said that thinking a head to the next fifteen or twenty minutes is not in his thinking process. She came back with a remark, “Well, then we can’t be responsible for taking his food and throwing it away”.

I said nicely and with a small smile,” I just told you his mentality will not let him say that. You are making him feel bad, now please stop “. She grinned at me and said,”Well, there is nothing we can do”. and I said, “Stop talking right now”.

Al was a mess. He was crying, agitated, mad. I could not calm him down. Then the social services lady came up and told Al that she made me take his four cars home. The talking stopped with Al but more tears fell, and these were gentle tears. I couldn’t take it. I know they have rules but I could not take it.

What little bit of gratification I got this morning was wiped out. I wanted to comfort Al but instead I told him I would see him later and left like a big coward. I didn’t want to break down in tears right there in front of him. I was afraid he would think I was taking his side and then more war would break out between the facility and him.

I hate it that he can’t have hardly anything else in his room. Just petty things. The housekeeping even threw a way an open box of chocolate covered cherries I had bought him for Christmas.

I can’t take it, I just can’t take it. I can not buy him anything he wishes anymore because they took all of his money. I sit here helpless and feel beat up. It wouldn’t do any good to buy him anything anyways, he could not have it.

What a coward I was by leaving. I had no choice but to come home and write to you, my friends. I want to protect him like from everything that hurts him, but I can not. I found out that the doctor did increase his pain meds and this will start tonight at bedtime. I am sorry, but I am hoping that the new dosage increase will somehow make him forget what he thinks he is losing.

I hate it because the Parkinson’s is changing Al’s personality from a gently smiley man to a grumpy man who barks at anyone. What can I do??? I am so frustrated. I just hate this PD so very very much

74 thoughts on “Support Hug Please

  1. Don’t beat yourself up Terry, I wish I could tell you it wasn’t going to get even more painful as the disease progresses. It is a good thing that the Dr. increased his meds, it is a shame that the director had so little concern for Al’s and your feelings. I know that one of the reasons that things that are worth something are restricted is to reduce the possibility and liability of theft. Al knowing you have them is probably better than someone stealing them and you not knowing where they went.
    Is there an aide or nurse that you can develop a relationship with? Sometimes it makes a big difference to have someone to be an advocate for you when you can’t be there. Perhaps a reminder on the wall to not remove anything without notifing you would be possible. Or making friends with the kitchen staff and discuss how he eats and how perhaps they could help?

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    • becoming friends with an aide may help. stolen clothes, throwing a way food, i guess this is normal? in a facility ….I wish i didn’t have to go back until i was toughened up around the edges, but i must go. i must be there for him

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      • unfortunately their are thieves everywhere, no matter how hard they try, they can’t catch them all,. the kitchen staff are taught to pick up food quickly in order to prevent people eating it whom it might not be good for. Anytime there are a number of people in an area, there are some that the food that is okay for your brother, could cause an adverse reaction to them. It is not always possible to be sure someone is coming back even if they are able to tell you, plus sometimes people forget to come back. It is not an affront to your brother, it is a policy that is implemented for a number of reasons. I realize that you see it from it hurting your brother, but there is another viewpoint. In any facility there are almost always people that see something and just pick it up, they wander into others rooms, if they see something they like they take it. We used to have the aides check these patients rooms every month or so to see if there was anything that we knew belonged to someone else in their possession. And yes making friends with the aides does help, they spend more time with your brother than anyone else, they know what is important to him, and if you are friendly, they are more like to remember the courtesy that you pay them when they have any problems. I know it is hard, but have you ever considered becoming a volunteer there? Or possibly even a part time caregiver? You certainly have the know how and it would give more access to his other caregivers.

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      • I understand everything you are saying and I realize the importance of the food being taken care of immediately. what bothers me is my brothers tears. he is always sad anymore, and this is killing me. I have been a professional caregiver for twenty three years. I have an ad running, but I am not positive it is a good thing to go back into the field again. taking care of my father when he was dying for one year and then immediately taking care of Al for five years has done a number on my emotions. I am struggling now for the past two months with depression

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  2. This must be so hard for you to bear, Terry. I think loopyloo’s bit of advice is very good. Something has to be done to ease the situation, both for you and for Al. Sending you BIG hugs.

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  3. Terry, you are a great sister, and a great guardian angel! I am so glad the doctor is increasing the pain meds. You are good to think of Al’s comfort ahead of his function at this point. As for things of value being in the room…yes, they may be damaged or stolen, sadly. But that is something you and Al should be able to assess for yourselves…is the value of having dear things nearby worth the risk of losing them? (i would suggest that to Al right now, those things are as good as gone, and giving him no comfort) if it is worth the risk of loss to have the benefit of those items nearby, even temporarily, them the nursing home should have a release of liability form for this. Have you talked to Hospice yet? Not putting a timeline on things, just letting you know that they have wonderful counsellors, for patients AND family, whether or not Al is in their care. Please consider that. Grief is natural, but I hate thinking you are beating yourself up for things that are out of your control. Frankly, many of the people you are working with at this nursing home seem a bit Insensitive. That is unnecessary and uncompassionate. Another viewpoint from an independent organization might help everyone work more smoothly together.
    Many, many hugs to you and Al.

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    • I guess nursing homes are different than what I thought. they look at Al as one patient out of many.I totally forgot to call Hospice. I will write myself a note. i have talked to Al many times about the value of his cars an what would happen if they got misplaced or taken. he always seems to think it won’t or can’t happen to him. i understand the rules. i have great difficulty watching the tears and seeing a new side of Al, the crabby side

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      • I am glad you will talk to Hospice. Not all nursing homes are the same. I have worked at many, and know the ones I would choose for my own family or myself. And it is not just a matter of price. My favorite one is definitely working class, but they have a strong family feeling. Nobody should feel that he is just one of many 😦
        A lot of changes. Very hard.
        Xxxooo

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  4. Keep praying for Al and keep trusting the Lord… much of this is in the Lord’s hands now, there is only so much you can do for Al. You have done all you can. Just be there to help him, when you are able and give the rest to the Lord for His keeping. Lord bless. Praying as always.

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  5. Terry, I agree with the other commenters. I know this may seem difficult, but give literally give it all to God. You, your brother and the situation. There is a release when we “let go and let God.” God knows your plight and he wants to help. You will find peace and God will take over for Al where you have left off; and God will bless you my dear for loving your brother as you do. God loves him too…..

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  6. Looking after someone’s welfare that isn’t able to do it for himself is a real challenge. In the process, don’t be too hard on yourself and don’t allow yourself to become frustrated because you can’t make things better. That is perhaps the hardest challenge of all. Take good care.

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    • I can not quit seeing him. my soul won’t let me stop but it is hard almost every time. i have to learn somehow to leave the facility at the door as i leave. thank you Lori

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  7. Maybe bring Al a car or two with you each time you come for him to look at …letting him know you have to take them home for safety’s sake… but, you will bring something new each time you come …
    Just thinking…
    Sometimes you have to be the meany when it comes to “rules”…tell them you are dating his candy and such…and it IS NOT to be throwed away until that time!…and then YOU will do it!…
    I’m such an instigator!…but, I saw nursing homes in action for my Mom and my Aunt…and You have to be his “protector”… mkg

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  8. Terry my dear, I can’t give you words of wisdom, I can’t take away your pain, but like all the others above, I can be here as a virtual shoulder for you to rest your weary head. Please take care of yourself. x

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  9. Hugs, my friend. Sometimes the best we can do is pray…but that’s a pretty powerful thing even though it doesn’t seem like it in certain circumstances. Keep praying. Continued good thoughts from here.

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  10. Terry…I of course send you hugs…As we who have to deal with places such as nursing homes fine out …that while it is a place of caregiving there are so many rules and so many different people that work there and the turnaround of staff seems high…so while you tell one person something it will not reach others who also care for him. Unfortunately that’s the way things go.

    I remember telling some that my mother could not respond when asked a question …so don’t expect her to be able to do so….but then the next day someone else cares for her and so on and so on…. It is very hard to go through this…The cars to be taken home ..they are likely afraid someone will steal them….

    Be all you can be for your brother but don’t beat yourself up that you can’t change all things that you would like to….Diane…

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  11. sorry you are going through this and wish there were something any of us could do to ease this burden from you. the facility has to protect themselves by not having expensive items that can be stolen and they would be responsible. really walking away is the best thing you could have done. without someone to argue with they would have to stop.

    again i am so sorry and sending big hugs dear girl!

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  12. Huge hugs Terry as this brought a tear to my eye too! When I quite the old people home I felt sad and glad in 1 breath. You know also that families only see one side of the story, as you’ve been on both sides of the fence. I detested seeing how carers/ house mothers would take food away from those taking too long to finish ,and would chastise them for it. As painful as it is! Al is still in the best place for his condition. Stay strong and my thoughts are with you! Hugs …….. Paula xxxx

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    • I think you have to keep a careful eye on the patients belongings whether it be food or clothes or whatever. i thought it was wrong for them to throw the food a way without asking first. that was my issue on that. yes he is in the best place, but if he asked to come home, i know i would bring him here. for me, i would rather his death come at home surrounded by his coca cola and me,

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      • Coke rocks and I agree, but don’t beat yourself up.Just then I thought about the Mariah Carey song, Hero! and I thought of you. 🙂 You should listen to it and gain strength from it! Super hugs Terry!! xxxxx

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      • that is a great song, but I need to go back and listen again. I am going to post it on my other site, Music that calms me. thanks so much for reminding me of this

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  13. You weren’t a coward, sweet Terry. There was nothing more you could do. I’m so sorry this is so hard and that other people just make it harder at times. Praying for you and Al tonight and always!

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    • i felt like a coward. i should have stayed and consoled him but turned and left. it was my heart breaking for his thinking people were taking his possessions away that ripped my heart. i will go back tomorrow and try again

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    • Al knows so many songs from the past. what year they were made too, but he has no use for music at all now a days. i have bought him players and he won’t touch them. once i was listening to a relaxing station on sirrus and he made one comment, that was nice, so i asked him if he wanted me to find the station for him on his tv and he said no. thanks though for the idea

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  14. It literally breaks my heart to know that you are going through this and wish that I could help you in some way, and if there is anything that I can do for you, please be sure to ask. You are a wonderful human being and a great sister to Al, you have done everything you can possibly do. I can understand as to why the facility would not want him to have the cars in his room so he won’t injure himself. However, I can’t understand the despicable behavior of the staff member regarding his thought process and not holding his food for him. Perhaps you can place him elsewhere, if not, someone above made a comment saying something about making friends with the care takers. You should follow that advice, it may help. In the mean time try not to be so hard on yourself, you are an amazing human being and as you can see by the all the comments here, you are loved very much. Big hugs angel 🙂

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    • it is so wonderful to be able to talk to you again. this is harder than caring for my dad when he was ill and dying. i think because with dad it came to an end and with Al it just seems to go on and on. i am working on making friends with the staff that help Al the most. I don’t know what else to do. Moving Al to another facility could help. The challenge would be in getting Al to agree now that he has his routine set. I have missed you so much. You are doing so much by just being my friend

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      • Sound like it is all very hard to deal with and I can’t even begin to imagine your pain. I know that you will get through this and that there are wonderful things in store for you for being such an angel. Never loose your faith, you are not alone. Feel free to count on me. Big hugs to you, I am very happy to re-connect too 🙂

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  15. I remember watching a movie about PD and how it does rob you of the one you love, that it gets worse and not better. I have a feeling one day, you will be campaigning for change, research, and support so that others who are suffering through this pain as a caregiver, will benefit from your experiences of endurance. And this is exactly what this is. Resiliency. Nothing glamorous, perhaps at times you may even feel like running away. The difference is, like an athlete, you recognize where your limits are, and see where you want to go next. Take the next leap. Every gift has a challenge and every challenge has a gift. You couldn’t have known this would happen, and it’s not your fault that they have arse backwards policies. You’re doing the best you can, and I hope you give yourself more credit, and breaks to do what you need to do to take care of yourself, or else, um, end up in a state of deteriorating mental health as well, which would not help anyone.

    Hugs to youuuuuu… self-care….

    Pink.

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    • I started taking exercise classes and it has helped. For one hour each day I think of nothing but the teachers voice, but I find myself sleeping more and more when I am home. I m not sure why, as my sugars are coming way down and so is my weight. so why the extra sleep? i love talking to you Pink. it always helps

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      • You are great motivation for me to get back into my exercise routine too! It’s definitely weird and tense when I don’t work out, so it’s awesome that you are finding your centre by going to one for exercise 😀 Always great talking to you tooooo

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      • that makes me feel good that I can motivate one of my friends. too bad we can’t do this together, but i think we can in our minds………………it is always so nice when you stop by and chat Pink

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  16. Oh, Terry, this is all so sad, to see your brother floating further and further away from you and himself, in a nursing home, where everybody only has time for their own importance, instead of what they have to do, or there isn’t enough staff, or… I think there’s always something not right. I’ve seen this too around me 😦 I hope you’ll get more good days with Al, so that the bad days dissappear. For now I give you my biggest hug and hope it helps for the moment. ❤

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