Need Your Help Again

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I have this issue going on so I want to ask for your advice. I also have some information for you also.

The first being Al. I am learning that the days are becoming a little more confusing for him. A good example is this morning. He brushed his teeth after breakfast. I then placed his electric razor in his hand and asked him if he would please try to shave and I would help if he needed it.

He said he already shaved. I said, “no, you just brushed your teeth.”

After a minute of trying to explain he was crying and arguing. I then took the razor and began to shave him. Then he wanted the shaver back and he tried it. It was like something clicked and he realized he hadn’t previously shaven.

This is one example of what is happening here. Last night is another good example. He has terrible tremors and many times he and I have done hands on with changing the channels. Many times I have shown him which buttons he is allowed to use etc.

As he was changing the stations the remote went funky on the inside. No more switching, no nothing. I worked at it for about 20 minutes, frustrated because I didn’t know which button he had already pushed to mess up the remote.

I finally called Dish. After walking through commands and nothing happened, the staff decided it was definitely the remote. This morning a technician is coming out to fix whatever is wrong.

After I hung up from Dish Al went on a rampage of him hitting the wrong buttons. This is because it is usually the case. I explained that this time he did nothing, it was all in the remote.

He cried,  he wailed he started getting mad. Mad at himself and I think mad at me because I was telling him it was not his fault. This went on for some time and I could not reason with him so I left his bedroom.

I went back later and offered to take him out to the couch to watch the main TV so he could watch his shows he liked. At first he refused, on the kick of he did something wrong. I was actually starting to get a headache, letting me know that two arguments in one evening were not doing my blood pressure any good.

Finally I convinced him he had three choices. Watch the TV in  his room with one station and be limited on viewing, go to bed, or come out to the living room. He did let me bring him out here with me.

This is happening more and more. I blame the confusion but I also know from years of experience Al is a persistent arguer. I can pop a calming down pill in him or wait for him to reason things in his own  mind.

Part of me thinks if I pop a pill every time he is confused or gets upset he will be living on these pills.

What should I do? How can I handle this differently as the mind of Al becomes more ill?

 

100_0749The second part is the talks of Al and his funeral. He is becoming obsessed with who is not going to be at his funeral. It is also a familiar topic in our home now a days.

I feel guilty because my mind often drifts to the future, thinking on his funeral. I kick myself for doing this. It makes me feel like I am focusing on his death instead of his living. I am not actually, but I do ponder the more he brings it up.

I was talking to a friend here at WP about the topic of cards. I was wondering if it would be proper if I ever have to make that sad announcement to my friends here would it be alright to let you know our home address in case anyone wanted to send cards.

She suggested I not wait for that gloomy day. That since Al is having issues about who will or not be at his funeral that I suggest Thinking of You, or Wishing You Well, etc. cards be sent now while he is here to enjoy them.

So I thought that was a good idea. I guess what it comes down to friends is that I really do consider you my friends. Just not people in  passing, but friends who are involved with Al and my life. I would want to let you know if something happened to Al. I don’t look at any of you as,oh they are just WP friends. Nothing more or less. No, I look at you as part of my life, part of Al’s life.

Al still has his birthday card, and sometimes he will ask me to get them out so he can look at them and hold them.

So I think I am asking you, would you like to send Al a card now?

If so, please email me at tellmenolies2004@yahoo.com

I will be more than happy to send you our home address. If you go by another name through your emails that I may  not recognize, please put Al’ card in the subject area of your email so I don’t consider it trash or spam.

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40 thoughts on “Need Your Help Again”

  1. Terry, the cards for Al, while he is able to enjoy them is a really great idea. Just think what a blessing that will be for Al now, and also for you later, when he has passed. Also, although many of your WordPress friends live too far away to be able to attend Al’s funeral, you could get a poster board, and post the cards on it. Explain to Al that these cards will be at his funeral, representing all of the people who love him and will be there in spirit. Perhaps you could also encourage your friends to send a picture of themselves, so he can see the people who will be there, and this may make it more real and comforting to him.

    Also, when he is really confused, don’t worry about whether he has shaved or not. I learned from working in the nursing home to pick and choose your battles. If he doesn’t want to shave one day, it’s not a big deal. And as far as the remote goes, they make simple tv remotes for people with dementia, and they aren’t expensive. That may solve some of your issues.

    http://www.dynamic-living.com/product/tek-pal-simple-tv-remote/#clear

    Hope this info was helpful, and I would love to send Al a card. We’re friends on facebook, so you can inbox me your address.

    Love you,
    Cheryl

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  3. music, put on some bob dylan, neil young, easy listening, the eagles, not honky tonk for sure, but music soothes the mind and brings back old memories, and everyone has ears!

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  4. I may have a different perspective on the pills than most people. I think if they help him, if they calm him, making him and YOU both happier, then why not give them to him? Make him as comfortable as can be.

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      • yes but then you can take medications to deal with side effects of other medications and it becomes a snow ball effect

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      • Yes, Terry, I know that all too well. I finally had to look at the fact I have had to take rounds of antibiotics my entire life for all kinds of infections; mostly allergy related. The last few years caught up with me; the last year I have probably taken at least 10-15 rounds of oral antibiotics plus I lost count of how many shots. It totally messed my digestive system up. But thank God for Probiotics and Omeprazole! God is the great healer though. However, if antibiotics had not been discovered when I was very little, I would have died and most likely my brother too. Perspective is God showed me and my doctor what to do.

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      • I am sorry to hear that you have had to deal with so many medications but I am so thankful that you have lived your entire life instead of being taken to heaven early. Medications are a good thing in most parts but the side effects can be hazardous as you and I both know. Thank you for sharing some of your life with me. God does exactly what is right

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    • this is true. I always hate to see him drugged up but yet he is calmer when he is on them. I will do as you suggest because you are looking at his comfort where I am looking at it medically

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  5. I agree with sharechair, at this point in his life why make it more difficult for both of you? This is the time for you to enjoy not be frustrated with your brother nor he with you. Ask yourself this question as you know his death is imminent, would you want the frustration and anger you both feel at these times to be your lasting memory if either one of you died within a short time of the dispute? I am sure your answer would be no, so please for the sake of enjoying the time you have left together make it valuable memorable time, give him the meds. God Bless dear ones.

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  6. Pingback: Al’s Card Update | terry1954

  7. Terry, have you thought about CaringBridge? it is a website for people who are ill; Heather McCoy our girl with Cystic Fibrosis had a page there while she was at Duke having her double lung transplant. I am not sure how it works but they allow people to post messages, and read messages from those who are sick. It might be worth checking out. You and Al could write daily things together and people would reply back to him!

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    • we are on it but haven’t posted for some time. no one ever replied to anything I wrote, but thanks Cathy. I appreciate your thoughtfulness very much

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  8. It’s Al’s birthday coming up??? Isn’t time passing so quickly. But really we should be sending Al when ever … I will see what I can come up with. I agree, make his time and life so comfortable as it can be even if it means to give him some pills. You follow your heart and mind, Terry … Al’s life is all about comfort now.

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    • no it isn’t Al’s birthday. Al is so afraid no one will come to his funeral since his Aunt and Sister ignore him. A blogger suggested sending Al cards of well wishes and get well now along with a small photo to match with who sent the card. I am going to get a poster board and place the photo beside the card and then can enjoy them while he is still here. funeral cards can be sent when that time happens.

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      • We don’t need any cards or flowers when we are dead …. let’s show that we care while the person is alive and can enjoy it. Terry, to be honest personal .. I couldn’t give a toss who is coming and not coming on my funeral – will make no difference to me .. at that point – you have to try to explain .. that the most import thing is that he will met the person that is so important to him, God.

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      • You and I understand this, but for Al it is a different story. He is very fearful that no one will be at his funeral. Which leads to this idea of cards now. I don’t really understand his thinking, but I will do what I can to help him realize many love him

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  9. I think what’s incredible about you is how much wiser you have become since not-sure-how-long-ago he was home, left, and returned. You ask really great questions and I’m not sure if you’ve inquired with a physician or pharmacist as to what to do with meds as this is a tricky one. I’m sure based on what is prescribed and resulting side effects, you could determine when situations are escalating beyond control and where chemicals may help in reducing stress that feels within himself. Its really a tough call and its normal to wonder when this psychological pain will end (as we say at Distress Centre). It’s not that you want his life to end, its that these incidences and stressors do make life pretty unbearable and its natural to want an end in sight even if its not the end of your brother. Topics such as death are not easy and losing someone we love, albeit they have changed, is very difficult.

    Truly, you are doing as much as you can and from what I can sense, it seems that you have garnered incredible support for yourself and establishing boundaries as well. I hope you are still maintaining self-care as this is critical to ensure that you yourself don’t end up in a mentally fragile condition. Exercises, getting outside for just a few moments, even an hour, is important for your resiliency and I really do hope you are making time for you too, to avoid caregiver burnout.

    Even if its escaping through fiction, but more importantly physical release through healthy exercise, or even a walk, can really make a difference, give you added clarity, and more importantly, taking care of yourself…

    Hugs to you my friend… I’m in deep awe and admiration of your strength.

    Pink.

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    • Your comment touched me deeply. I do seem stronger now than before. I believe God had a huge role in Al being in the nursing home for six months. He has been home a month now and I feel more confident being with him. I look at him through different glasses than I did before. He has M.S.A. It is a dreaded and terrible disease that runs its course quickly and then takes your life. I believe God gave me the rest that I needed in order to walk these final chapters with Al. I write, I take pictures, I take lots of naps!! LOL

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      • Lots of naps is good! Sweet dreams of hunks too, I hope!

        You are definitely different than before… like this calm and understanding even beneath the venting… I notice it HUGEly… you are even better than you think you are… 😀

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  10. Terry, I think you can try to give Al food and tea that calms him down. When you give him tranquilizers, his condition may get worse in time, also because he already gets his medicine for Alzheimer. Pills draw a lot of vitamines of somebody’s body, that makes somebody angry, upset, anxious, depressed a.s.o. I think Al’s better of with extra vitamine C and B-complex. You can give him food with a lot of vitamine B: oat flakes, banana’s, brown rice for example calm down. Tea of Valerian, Passiflora, Hop and more, have the same effect, but you have to give it daily.

    I think Al is feeling very helpless in this situation and he is very aware what he can and can’t do anymore, that’s why he becomes so angry. I think I would react the same if I was in his condition.

    I’ll write you an email for your address. I love to write a card to Al..anything to make him happy. Big Hug 🙂

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  11. Pingback: Death, funerals and such | Sally Gilchrest-Unrau...So You Wanna Be A Writer (quotes, smiles, weird thoughts)

  12. Reblogged this on Sherry's Space and commented:
    Al, I have an idea. Have your sister put your toothbrush, razor and anything else you have to do, out.
    For ex. lay toothbrush and razor on the sink and after you brush your teeth, put toothbrush back and then the same with the razor and anything else, like clothes and things, Try that. I hope it will help

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  13. Wonder what would happen if you just maintained a neutral position when he starts to argue. Instead of trying to persuade him, say things like, “Oh, did you shave already? Want me to check and make sure you got everything? ” Or, “Well, Al, I know you’re upset. It’s ok, I understand why you’re upset. Do you think you can let it be now? Because I’m really tired, and I don’t want to argue with you.”

    When I’m working with parents who are struggling with their kids, I tell them, “You know, when the audience leaves the show generally stops. You don’t have to attend every fight you’re invited to.” This position would need some tailoring for Al, but maybe it would help.

    And I’d love to send Al a card. I’ll email you.

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    • I never thought of that really. I always thought I had to explain myself to death until he understood. It would be a giant relief to let him know I understand and be able to back out with simple words. You know what? I am going to give this a try the very next time. Thank you so much for a fabulous tip!!!! I emailed you also

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