Last Evening and Even Today


Saturday, the caregiver from the new Home Health Care agency came, and gave Al his shower. She did a fantastic job and Al seemed to like her. We had also later in the early afternoon, taken him to the ER to see why he was limping so bad. He had a bakers cyst on the back of his knee, and it had grown a little, but no one will take it off, as the rehab is so aggressive, they stated  Al would end up in a wheelchair much sooner, from not being able to walk, from lack of the therapy.

We came home and he was teary, and a little whiny, and as the day drew closer to an end, he became more sad and irritated from his pains. I had asked the family doctor if there was some medication that we could change to, because he was suffering  from so much pain in his legs from the Parkinson’s Disease, but the doctor said no, there was nothing else, that was compatible with his heart medications.

As the evening became longer, Al turned into arguing and crying and asking so many questions that he had asked several times in the past. I tried to be patient, but after two hours of explaining myself over and over, I had a big basketball size headache, the back of my neck was throbbing and my two shoulders felt very stiff.

I told him I had to quit, that I was not able to answer his questions to his satisfaction, and there was nothing else I could do. I explained that after bed time medications, I would prefer to turn the television off and he could go to his own bedroom and watch his television and lie down to rest his legs. Even as the snacks came and went and I watched him make it safely to his room, the tears still continued to fall.

I went to my room and started praying. I told God I was sorry that I could not find the way to calm Al, that I could not get the tears to shut off. I told God I was afraid for myself, afraid that I would suffer from a stroke or heart attack, due to the constant stress. I asked him to guide me, and to forgive me for my sins of the day, and to help bring me sleep and rest.

This morning I awoke, and I did not say anything to Al when he came out to the kitchen. Today he managed to put his frozen french toast in the microwave and pour his own juice and milk. I just had to get his morning medications for him. I spent time on my emails, answering them, while he ate.

After he was finished he came over to the living room and laid down on the couch. Before long, the tears started again. I let out a sigh, as I did not want to start this again on a brand new day. I had tried my best to look nice, as today, I was going to be allowed to go get groceries, while the caregiver stayed here and showered Al and watched over him until I was back.

I will admit, it was nice to think about what I was buying. To remember what was in my cupboards and freezer, and to be able to look for sale items. Al did start the crying and letting me know about his pains. He wanted to know what he did to deserve all this and why I could not fix it. By the time the caregiver arrived, my shoulders and neck were hurting again.

I explained to the aid, that I needed more help. I needed the RN to get a hold of me to see if there was possibly something better for pain or even to help him forget about himself for a while. She is to call in about a half an hour. We chatted for a few minutes, while Al laid on the couch and wailed to the aid about his aches and pains. I just wanted to escape. I took my achy shoulders and neck with me, and left as soon as I could.

When I arrived home, Al was lying on the couch, and had a half-smile on his face. The aid actually came with me to the car to help bring the groceries in. Now that totally impressed me to the max!

Once inside I sat talking to her and signing the papers,showing she had been here, and she said that the two of them had chatted most of the time after the shower was over. She said that she had to help him get in and out of the shower chair, but this was no surprise to me, as I do to help in that area.

She went on to say, that he told her all about Storage Wars, and American Pickers shows. She said that they talked about coca cola, and the tears had dried up, and there was a tiny smile.

I finished up with her and walked her to her car, stating that this made me so sad. She said, what makes you sad, and I said that he does not cry with you, and he talks, and even smiles. She explained that he did cry in the shower, but  then it  stopped. She said she forced him to change the subject from him to something else, but she agreed that he needs a different medication for short periods of tears and complaining, like maybe Xanex, and I agreed.

I became sad because I want to be with Al without all of the tears also. I want him to smile when he is with me.I want him to be able to talk to me like I am his sister and not his dad. She explained that he was the same as when I was a young mommy with kids, that kids are always better with outside family members, then with mom and dad.  She said it is no different here. I sort of understood, but I didn’t like it. I felt like I do all the spoiling of him, cleaning up poop, showering, dressing, all of it, and all I get is tears, whining, and complaining.

I am trying to see it as she is saying it, but it is a slow process.  I do know that if for some reason, home health care does not work, there will be no other choices to go to, and I will have to make different arrangements. I am willing to give it a chance though, and I will continue to ask for patience from God while we journey this new path in the road.

sad boy

38 thoughts on “Last Evening and Even Today

  1. I think hun the real problem here is the relationship dynamics, he is acting like a kid but you are trying to treat him like your grown up brother and grant him the respect that goes with it, be honest when the kids were little and pulled these tricks did it bother you as much I would guess not you know at the end of the day you are mum and they will always love you best even if they act better for strangers, with Al it is different you resist the urge to speak to him as you would a child and while you know he loves you as a sister he is acting towards you as a parent, I don’t know how severe his other mental issues are but tough love is your only hope tell him point blank if he insist acting like a child he will be treated like one and send him to bed with no supper, yes the parkinsons is tough on you both but you need to draw a line on what you will tolerate and what is crossing the line

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    • i really believe that you are exactly right. i want to treat him as an adult sibling, but it isn’t working. another person suggested i send him to his room. now that both of you are saying the same thing, and even though i knew my other friend was right, i know i have no choice anymore. i will have to use tough love, and if nothing works than i have to look else where for help. do u think it is ok to tell him i may have to place him if he does not quit with the arguing and whining?

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  2. I am so sorry you are having a hard time. Hopefully in time home healthcare will be all you want it to be. God bless you and give you the patience that you asked for.
    Barb

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  3. Terry, I am also trusting the Lord that this home health care will continue to work out. It seems as if things are going well with it. My heart does hurt for you because i can see your great burden to want to help Al, answer all his questions and make everything better. I’m afraid it is impossible for you to do all these things…. You can only do what you can do. You are giving your all and I am hoping that you can find some comfort and peace knowing you can do.. you are going above and beyond what most would do. Lord bless you my friend.

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    • thank you Rob, because of other replies, i am learning that although it will break my heart, i am going to have to practice tough love. if he can stop the tears and arguing with others, then he can control it in front of me also

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  4. It’s good that you explained how you felt to the caregiver, and she in turn told you what worked for her to stop the tears. Maybe next time Al is upset, try changing the subject..I don’t know if you’ve already done that..but it’s worth a shot.
    I’ll keep praying for you both. You will not have a stroke or a heart attack Terry. You will not. I know I’ve said this already before..and I know I am not in the situation, but God never gives us more than we can bear.
    Continue to trust that he will work things out for you on your behalf. Thank him always. He’s always there for you Terry..You are strong and blessed!

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  5. Hi Terry…I’m sorry that times with Al are still such a struggle for you. While it’s good that you get to go out shopping it must be a stress factor when you head home again not knowing how Al will be with you. You must take care of yourself as well as Al. I will pray for you that this new arrangement will work but that you will get some respite….Diane

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  6. Terry, I think Paula has nailed – you treat him as an adult .. when he really are a child. Then I think you want to much and you want it now. The caregiver can see it from an other prospective and with fresh eye – plus she are not attached to Al as you’re – that’s why she can handle him much better. I think it’s good that you talk with her about how you feel and ask questions. Let everything has it’s own passe – and you have to come down to his level when talk and deal with him. He are spoiled too … I don’t envy you at all, but you’re doing a fantastic job and I’m sure with somebody else in house more often things will change.

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      • I think it will … also that you’re leaving the house .. more often will be good. You must be getting on each others nerves – always around each other. I think that could be a reason too for both of you.

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  7. I know that there is nothing you can do LOGICALLY to explain things to him, just like we couldn’t with my Dad. There really is no sense in you arguing & trying to be logical, trying to explain, etc. They just can’t understand & get past what they’re thinking & feeling. It’s like beating your head against a wall. You can’t take it to heart. I’m not saying it’s easy…..but just remember, you cannot explain it to him or “argue sense” into him. It will not work. Sorry. 😦

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    • thanks to several of you on here, i now realize this, and i have decided that i am going to ask him to go to his room and rest, for both of our benefits. thank you Chrystal for helping me to see this

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  8. I think the care giving you are getting is the best answer… Nurse…aide to help with his needs… them able to talk directly to the Dr. if needed…Has to be better…Please give them a chance to do
    their job and help you… As one of your blogging friends said, “He is treating you like a child does his Mother”… Kids are always worse for their parents…Not that it’s any fun”… but, it is just how it is…
    Just know when it gets down to nit and grit…YOU are his favorite… But, like a parent…The kid thinks we can fix anything!…But, we’re just the parent…learning aong with the child as he/she grows…
    It is a process…As of now…I think from what you have said…and the way they are talking…they are giving you the best advice they can… A wheelchair…may be next…all in the process…
    and then you will have to decide just how much you , yourself is able to do to meet Al’s needs…

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    • i am willing to give them a chance. it takes time i realize, but tonight has been heaven as you already know. funny that you mentioned the wheel chair, because they asked me that also. i can not have a wheel chair in here that would go to his bedroom. the hall is too small back to his room, because the washer and dryer sit there. so don’t know what is going to happen, those appliances could be in the end the stopper for everything…………

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      • Isn’t there a saying ‘familiarity breeds contempt’ – who knows why? But it is very hurtful when Ants talks to other visitors but gives me the shark eye.

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      • yes there is, and i have been letting myself be hurt from this very thing for almost five years now. i need to get tough, but don’t know how. i have improved and have been able to say no more easily, but not near tough enough. i look at him as sick, but even so, there are manners to follow and good etiquette

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  9. I really felt for you here Terry. The helper sounds very lovely and I recommend you keep talking to her in this way – its probably very good for you, I imagine. Such a difficult situation and you’ve already received a lot of support and advice here so I will just add that I am thinking of you and praying for you both. Blessings. K.

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    • thank you so much Ken. it did feel good to be able to not be in a doctor’s office and feel comfortable enough to talk to the nurse. the shower girl came again on MOnday, and did just as good of job as the first time…………..thank you so much for your support

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  10. Sending love and prayers, Terry. It’s just so hard on you . . .and yes so stressful to deal with all the pain and tears and sadness. It gets to you!!! God bless you as you keep trying and doing your best.

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  11. Pingback: I Am Sore | terry1954

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