Wow, What a Day


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When I went to bed last night the winds were howling and it was snowing. This forced me to pull the covers up closer and gave me a quiet moment to reflect on yesterday. Visiting Al was something I wish I had dreamed last night, but instead it was a day time reality.

When I went in to see him the first thing he did was complain about how long it took him to get dressed. He stated that it was a half an hour. I asked him why he didn’t get help from the aid standing near by and he told me he got dressed alone, except for his socks and shoes.

I had also taken him some of those soft sugar cookies with yellow icing and sprinkles on top. Are you familiar with these? You buy them in the bakery area. I will grab some for Al when they can be bought on the day old rack. I had them first here at home so I had managed to stick my fat little fingers in them first. By the time I had placed them in Al’s fingers there were two missing.

I believe there are 10 cookies total in a package. So when Al and I were conversing he also told me that the nurse the night before reamed him about how many cookies he had eaten. This upset him quite a bit as he explained to me that he told her the cookies weren’t full when he got them. What I don’t understand about the cookie issue is, the facility states they can not refuse Al any food. He had been eating himself all most sick and so a few months ago Al and I started doing his menus for each week. This is stuck too and Al can’t change it without my approval. So why was the nurse on him about the cookies? Even if she was genuinely concerned according to the facility they can’t stop him. So why get him all keyed up and go into the guilt and crying trips?

He said she didn’t believe him. From there on out it was a mess. I was there for about three hours and he had changed to talking to me in a way I could understand to either totally messed up or the Parkinson’s Dementia.

His biggest upsetting story was that usually he goes potty right after breakfast but this time he didn’t have to go. He told me that the aid said he would go so she placed him in the door way of the bathroom and made him sit there until the desire came for him. He stated that he sat there for an hour.

My biggest problem is not what you would think which may be the tears. No my biggest problem is while he remains in that place whom do I believe? Of course, I want to believe Al. He is my brother and has been known to lie to me in the past. His mentality is about 10 years old and maybe you can remember or even have kids around that age. If they think they are going to get punished they may lie instead of speak the truth. That is where Al would fall into the category. But to just outright lie is not his nature.

I have to also take into consideration that people who see animals on the floor smiling on them may be confused about the story they are telling.

Al was still upset during lunch but when his food came it did deter his mind for a while. After lunch he was right back at the same story. His issue was that the nurse that he told about his morning didn’t believe him. Which was that he dressed with no help and the cookie ordeal.

Another thing I learned is that some Dentist I did not know came into his room yesterday and got Al to check his teeth. When Al mentioned to him that his sister had not told him about the visit, the dentist replied, don’t worry , the insurance will pay for this.

There are strict rules that no one is to be in Al’s room without my permission and knowledge. I have a couple of reasons that I won’t go into now but I have always told Al that if a professional or not wants to see him, I must know about it first and then I will tell Al.

After all of this had gone on for so long I asked to see the head nurse in charge of the building. I explained to Al that I would look into all of this. It was the only way I could satisfy Al and also let him know that I believed him.

Whether I believed Al or not, I will still act on his behalf and try to dig to the truth. When I had my short little meeting she denied anything I said. She said,

Al always has someone in his bathroom when he gets dressed.

You know that Al gets very confused.

You gave permission for him to see the dentist.

Now first of all Al is up and dressed and down to breakfast by 8am. How does this charge nurse know what goes on early in the morning when she doesn’t arrive until 8am.

I realize Al gets confused, but I have always believed that even the biggest rumor starts out with a bit of truth.

The Dentist, right before Christmas I received a snail mail stating Al was going to be going to an out-of-town visit to an eye vision shop for an exam. First of all with all the good doctors right here in town why would they take him a  half hour drive a way. Secondly, when I received the letter I called plus went in and told them Al had just been to an eye doctor in October for an exam and new glasses, so this was unneeded. I also told her at that  point and time that because of Al’s issues I had particular doctors that I wanted Al to remain with. Therefore we would not be needing their doctors who are linked to the facility’s accounts.

The charge nurse took me up to the nurses station and pulled Al’s file. She showed me where I had signed on the dotted line on the day I had brought him in that I did give permission. Evidently when I went in December than about the eye exam nothing was actually changed on his file from my request.

I don’t know if someone forgot to do it or if there is a kick back of a resident using their choice professionals. I lost on that one and now have to start over again on Monday to try to get this changed once again.

When our little chit-chat was over and I tried hard not to catch the ball of guilt I was thrown and the head nurse trying  to make me realize Al was a patient there and therefore out of his mind, I went back in to see Al. He was laying down with his bed alarm hooked to him. He was crying and getting a little loud with his words.

His point he was trying to make was that when he first lays down they hook the alarm to him and place it on the back of his shirt. But when he is tired of TV he likes to flip over to his stomach and go to sleep and he can’t because it sets the alarm off. He has moved too much. What he was trying to express but the nurse didn’t understand was that he needed someone to release the alarm when he flipped over and then reattach it. Al’s mental issue isn’t connecting to the fact that all he has to do is turn his call light button on when he wants to flip over and they will change the placement of the alarm.

The nurse went on and on about how she had to keep it out of his reach, and she wasn’t changing her mind. She and Al argued for several minutes while I watched the ugly scene happening.

I finally stepped in and told her what he was trying to express but she either didn’t get me or by then her nerves were frazzled from talking to Al. So this went back and forth with the conversation being from the missing cookies, to no one helping him get dressed, being placed in the bathroom for an hour , to the alarm.

Once again I left Al crying and feeling like no one cared or understood him. I told him I loved him and that I would see him soon. I went to my car and called the doctor. I explained most of what happened. Now they are arranging a special doctor to come and see Al to see how he is doing and if they can do any medication changes.

I want Al to be content, but  I don’t want him all doped up. Seeing him all drugged up to keep him quiet is like me watching  him just lying there waiting to die. There was no talk about whether Al was telling real stories or not. It was all about how can we change this to keep him quiet.

I don’t know what is going to happen but I told the facility and the nurse from Al’s doctor that I demanded a visit with this new doctor  right before he went in to see Al. In fact as I am sitting here thinking about it I may do this plus be there during the visit. I just don’t trust all doctors, sorry. And since Al can’t speak for himself, I do.

I want to be informed of what thoughts this new doctor has. I want to be informed of what changes he may want to make with Al’s medications and I want to know the side effects and changes I can expect.

I am now to a point where I want Al comfortable but not so drugged up he is out of it, but I don’t know if I can have this happen or not. I am not sure if Al told all the truth or bits of it or if Dementia was involved. I don’t know if the facility is telling the truth or protecting themselves.

All I know is that I can’t wait to get Al home. It will be my eyes that see what is happening and I won’t have to hear second-hand stories. The more Parkinson’s advances the harder it is to keep him calm but I am darn sure going to give it my best shot.

50 thoughts on “Wow, What a Day

  1. *hugs* I would believe al as well the staff has consistantly demonstrated they are not interested in giving him quality care, just basic care. Any word on when he will come home?

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      • It should be $1000/mth. 🙂 I hate it when people have to put a price tag on someone’s life. I think $1000/mth for social security benefits, medicare, medicaide.. I’ve got a few friends that are on social security and medicare and it pays for next to nothing. It’s a shame really.

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      • he doesn’t get enough either. to live and pay for everything we all use a month is more than 1000, but they want these medicare and medicaid to have nothing

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  2. I pray you can get him home soon so all the second hand stories can stop and you can keep Al on your own. You’re a strong person and I am glad we have outlets like the internet where we can freely voice how we are feeling to just get things off our chest xx

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  3. The sooner he is home the better, and you then can see everythign for yourself and help him as you want. He will really like that and I am sure it waill make him happy, and might need less pills. xx

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  4. That sounds a lot like the issues my Grandma was having with the home. The nurses were rude, condescending and disinterested. I changed the times I was going in to visit her, to all hours of the day and night. They honestly had no idea when I was going to pop in. Middle of the day, evening, night(3 am a few times). My parents did the same(we all had a specified time we showed up previously). Her quality of care went up considerably.

    Try popping in at odd times, sneak in if at all possible, and witness how he is treated. Once you see it with your own eyes the head nurse will cringe before your wrath. They did for me.

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  5. Terry, I can’t even imagine the emotional struggles you must be going through everyday! It must be so hard to know who to believe. Forgive me if you’ve already answered this question, but is Al able to move in with you? You mentioned it in the past and I might have missed it if you’ve already said if he is or not. Just wondering 🙂 Prays to you both!

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  6. So sorry to read about the struggle you both have … I hope of all my heart that it will work out fine for you – when he comes home .. not so you end up with all this on your own 24/7 – 7 days per week. We don’t know what going on in Al’s mind neither, maybe he has made up with God and .. are ready … we all come to a breaking point, when enough is enough. Read this post earlier today, but I couldn’t get around to answer it because i’ts such heartbreaking situation that you both are in and that nobody deserve to be in. Been thinking of you the whole day more or less … It’s one step forward and two back, every day … I hope that this radio show and charity work will make your day pleasant and fun, because that’s what you need – to get out .. meet new people and be engaged in something … more than Al.

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    • I think so too. It will be easier in some ways to care for him once he comes home because we will have promised help plus I won’t have to wonder who is telling the truth. I think some days Al is ready to go and others he fights it. when he was in the hospital a couple of weeks ago he was real afraid of dying. i think he thinks about it often but when it comes down to it he is afraid, but then again many are afraid of death

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      • I don’t die yet .. but I’m not afraid of death as such .. when that time will come. I’m scared of pain, offering, illness .. not be able to have control over myself and my life .. until that time comes. And the older I get the more scared I get. 10 years ago I never gave it a thought – now I think about far too often.

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  7. Thanks for sharing, Terry. It reminds me of when my special needs gal was in public school .. .and all the stories, and me never knowing what really took place. argh. Praying for you and Al now, for peace and comfort, for the right medications and help for him. For him to be treated with dignity too. God bless you!

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  8. That’s just such a tough situation — we all want to believe our loved ones, and the facility staff has already proven that they can be indifferent to Al’s needs. It’s such a tough call. I hope when you get him home you will have reliable help. The eating thing is a tough one, too — at this stage they should be able to eat whatever they want, but at the same time they won’t be very comfortable if they eat themselves sick. I feel for you and my prayers are with you.

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    • you are right, it is a tough situation. I look at Al as a sick man who at this point should be able to just do what he wants. on the other hand there have to be guidelines. I went in tonight on a surprise visit at 8pm. He was sleeping so I woke him up. the first thing out of his mouth was that the day shift nurse told him he had to walk. I questioned the nurse on duty and she said she doubted it. Al had the name of the nurse right as I asked who the day shift nurse was. I asked her if she had also been there in the morning and she said no. so i said how do you or I know what really transpired………and she just looked at me. Something happened but what. The nurse he is accusing is the one who always claims to me that I should be using tough love with him

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      • When I had my hysterectomy I had one of those Nurse Ratchet types — coming in the room gung-ho and telling me I was GOING to get up and walk, then take a shower, then sit up for awhile. Then when she made my bed she set the tv remote on the other side where I couldn’t reach it (I assume to make me exercise to get it) and then left, and when I got over to the remote/call light she had it wound around several bedrails and stuck between two of them so that I had to crawl under the bed to get it. Later that day they came around and told me that my blood volume was dangerously low and I was not to be out of bed. I told them they might want to pass that on to Nurse Ratchet, and while they were at it I didn’t want her in my room any more. I only ever saw her passing my room after that.
        In other wards, drill sergeant nurses do exist, and they think everybody should just “walk it off!” Maybe Al is telling a little white lie, or maybe not. Or maybe I’m just saying all this because I really have it in for Al’s Nurse Ratchet. I don’t like her and I’ve never met her. Lol!
        She doesn’t understand that the tough love stuff is none of her business as well as not being her job. But I’m ranting, so I’ll stop. Al is such a sweetie, and I pray often for you both.

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      • I like that you ranted. It showed me that there truly are nurses like this. the one thing that is bothering me bad is that the more Al is thinking that no one believes him, the more depressed he is getting. I don’t tell Al I don’t believe him but he sees that nothing happens to the situation. I just have my doubts if Al is lying each and every day. I think she is saying something to him about him walking but doesn’t tell him to get up and walk, but she is referring to it and this way she remains safe from me the dragon. I don’t like it and somehow it has to stop

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      • Ah, the old “I didn’t TELL him to get up and walk,” game of semantics, huh? Lol, I would feel the same way — I feel for you and Al. Btw, a slight change of subject, but I love your flickering candle background!!!

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      • Thanks Becky. I believe professionals or for any of us I guess, that we can use certain words or phrases that the one receiving gets the picture but we can still be safe in our surroundings………….thank you for the backdrop candles. I keep them lit for my brother Al for hope that I carry for him to have peace

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  9. Happy Birthday Terry – you deserve it – what an amazing man you are and how fortunate Al is for having you in his life – I send wishes that both your lives get easier from now onwards 🙂

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  10. Hate to say it…but, I believe Al…over the home…They are so busy…and so overloaded with patients …The staff will say whatever is necessary…Am I judging???…no, I’ve seen it with my own eyes…Everything he said sounds like the truth to me…Not getting there when he needs them…
    Leaving him forever on the potty…fussing at him…not helping when he asks…
    So glad that he will be with you soon…mkg

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    • it makes me feel so good that you believe in Al. I can understand why others would not with his dementia. i will ask him what day it is and what time of day when I listen to his stories and he always has the right answers. there are times that he gets confused and I can usually see them. I think this facility is keeping their backs safe and in the process are causing me to doubt Al, but in the end I will go with Al most of the time. thanks Marilyn

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  11. Pingback: I Can’t Even Think of a Title For This | terry1954

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