I Am Sore

When there is a Parkinson’s patient in the house, it is not a good idea to plan many things

Audio baby monitor

Audio baby monitor (Photo credit: Wikipedia)

in advance. I have never been this way. I like knowing what tomorrow holds, and maybe the next week also.

Today, I have not been on the computer much, not because I don’t want to, but because I am so sore. I don’t get too much sleep anymore, because Al stays awake until wee hours in the mornings. Last night was no exception to this now familiar routine. I think I went to sleep about 2am and at 5am, I heard the music of his voice coming through the baby monitor that sits by my head on the night stand.

It is a good thing I am a light sleeper, because I heard a soft voice saying help me, help me. I jumped up like there was a fire, and walked quickly to his bedroom, and there he stood in a half-bent position, clinging to the corner of his dresser with both hands. His knees were bent in half from waiting for me to arrive and from however long he had tried on his own to make it to the bed.

He had to use the restroom, and he is trying so hard not to wet his briefs, that he helps himself to the floor and off he trods to the bathroom, and I keep telling him, please call me when you need to get up, but he does not want to give up his independence.

So, I look quickly around, and there is nothing anywhere to help me. I hold him up with all of my sleep power, while I watch his body tremor, and  his legs will not move. His body is frozen, a part that goes with PD. The mind is not connecting with the legs so when he tries to move, the legs don’t follow, and this is a big reason there are so many falls with these patients. I have seen him rock back and forth on his top half, but the bottom half are frozen to the floor.

I am not kidding, I told the legs to move, I marched in place, trying to get his legs to follow my actions. This went on for about five or six minutes, until finally movement was seen, but it was a battle to walk him to the bed. Now my back and shoulders and neck are throbbing from trying to hold him up.

I called the home health care nurse and told her what had happened and she said it was time to get a hospital bed and a bedside commode. We just happened to have a doctor’s appointment today with his neurologist, so I relayed the message to him.

He had not seen Al since February as he is pretty much a PRN doctor now to Al. He was surprised at the changes that have progressed in him. He spent quite a bit of time talking to me about the different areas of PD and he said that this was a bad case.

He said that the complete brain was being affected by the disease, and that Al could not help talking about death, as this is what Al’s body felt like to him. When the doctor mentioned a sunny day, Al said it was gloomy in his head. The doctor explained that Al was in the fifth and final stage of the nasty disease, and he was more concerned now with what he called , supportive care.

In other words, making sure that what ever Al needs to make him more comfortable, if I can pull it off do it. No more medications can be given for pain, so now two doctors have said no more pain med trial and errors, I am forced to believe it.

He wrote a prescription out for the commode and hospital bed, and it will be delivered here tomorrow at noon. It is sad for me, I have had too much information given to me, although, I need to know what is happening in our lives.

Remember the lady who sent Al the two boxes? Well, she and her husband drove four hours to meet Al and me today. We met up at Al’s favorite restaurant, the soda fountain. It was wonderful to meet them both. God picked the perfect timing for this, as for an hour it got my mind off of Al and onto other things, and she spent a lot of time talking to Al about coca cola. He loved it, but as he tired out, he started crying, and it didn’t stop, so we all hugged and said our good byes, and maybe one day we shall meet again.

We came home and I helped Al get undressed from the warmer clothes I had dressed him in the morning when it was chilly, to his favorite outfit, just his brief. He gets so hot and sweats so easy from the PD.

Tomorrow is a new day and it will be a big day more for Al than me, although, I will have to make sure my house remains straightened up. One therapist will be here at 8:45am, his shower girl will be here at 10:30am. The bed and commode will arrive at noon with complete set up done by them. Another therapist will be showing up sometime during the afternoon, and the home health care nurse will be here at 4:15.

I am not looking forward to all of activities. No nap for Al and no nap for me! LOL

74 thoughts on “I Am Sore

  1. Hey, WordPress! We need a Hate button for when we hate what our blogger friends have to tell us. And Terry, please feel all the warm arms reaching out to hug and support you through this horrible last stage. And, one more thing, please relay them to Al, too.


  2. Oh what a day. I got exhausted just reading about it. It is this leg freezing thing that has forced me to get Anthony wheelchaired here now because of my own back. I hope today’s many activities aren’t too exhausting for you Terry. Sometimes the help can be tiring too!


    • i agree Julie, four helpers here just tomorrow. i must remember, smile smile smile, while inside i am going to be screaming, leave! i want to rest!lol
      i have learned a lot today about Al’s illness, and some of it is sad, to know that there are no more stages left


    • and I am glad that you are one of them. for some reason i have always admired you from day one. you are strong and confident, and i like that about you. thanks for a great comment. you know how to make me feel better


  3. I may have not understood…but is there no more pain pills because it depresses Al or is it affecting him physically? I am so sorry Terry that Al has progressed to the stage he is now in…May God give you good rest tonight…Diane


  4. Terry,
    I am so sorry to hear the news about Al’s condition and disease progression. I know that it can be overwhelming at times to have so many home care workers coming into your home. I hope that you can take a few moments for yourself while they are there. Don’t forget that you need to care for yourself first- in order to continue caring for others.


  5. My Dad had Parkinson and I believe it runs in the family. Your post thus resonates. Maintaining one’s equanimity and perspective can be a huge challenge at times. We show up as who we truly are when faced with such challenges which have no positive outcome, only how we have been able to make peace with the situation.

    Thank you for a lovely post.



      • No he passed away a long time back.Parkinson is so debilitating that it reduces the capability to even fight common diseases.My Dad contracted pneumonia in the end.I was working in another country and he had already gone into a coma when I reached back.This remains one of the biggest regrets in my life……


      • i was told not to take him out in the winter weather unless it was fair outside or we had to. i am sorry about your loss, and please don’t beat yourself up. illness does not wait for us humans, it was in god’s hands and not ours. love and hugs


  6. Sending a prayer to you and Al, Terry. Please let him know he has a lot of people thinking about him. More importantly, please let him know he has a God who loves him! I hope your busy day goes well and I hope you guys can both get some rest.


  7. As an ex care assistant I have seen the ravages of PD with my own eyes. Not just what it does to the patient, but what it does to their family as they stand by and watch the degeneration helplessly. It really is a very cruel disease.

    Please know that I am thinking of you both, and that I am glad that you are recieving so much medical support xxx


      • If I had a magic wand I’d take it away for you, believe me. The heartbreak I’ve witnessed in my capacity as a carer would often reduce me to tears too (in private, of course, so as not to upset the person further).

        I see what Dom has to deal with every day because of my epilepsy, and I believe that the likes of you and Dom deserve medals and lifetime achievement awards.

        Always thinking of you xxx


  8. I am sorry to hear about Al’s prognoses. As I pray for you I hope you can feel the strong arms of Jesus holding both you and Al, giving you strength and comfort. I wish I was there to give you a real hug, but here is what my boss calls a spiritual hug…sent to you on angels wings. {{{{HUGS}}}} Keeping you lifted up to God in prayer ~ Patty


  9. As I said on one of your other blogs…I just knew it was going to be a hard day…Not that they all aren’t most of the time…We then try and see the small pleasures don’t we…
    I am glad for Al and you that the doctors are truthful with you…and seem to be helping all they can with nurses, aides, therapists , bed and wheelchair…SO many changes!…So trying!…Bless you!


  10. A very hard post to read today Terry. I feel for you and know you must be in a difficult place with all of this. Yet your posts continue to shine through with such a positive radiance that they are inspiring to read – even when heavy like today. Thinking of you and praying – as always x


  11. Pingback: I Am Sore | terry1954 | kenthinksaloud

  12. Pingback: I Was Led To Make A Trip! « MKG- Memories-Keepsakes-Gifts

  13. It pleases me to read that he was able to see the doctor and that decisions where taken to make his life more comfortable – I also know that you struggled with arranging for the new bed … the whole thing is so stressful for both of you and I really feel your joy over that there is happening positive thing – but also the anxiety over everything and that you still carry most of the burden. My thoughts are with you in both the joy and the anxiety. Love you, Terry ..


    • i would prefer not to have very few days like the past two days, but today, Saturday, is much calmer. I got lots of sleep and there will be no home health care here today. i love you too my friend. you mean a lot to me……………hugs


      • Terry, I really cares for you and I’m concerned at times too – when you have it really rough with everything. Glad that today is better. A good night sleep helps big time.


    • My dearest friend, I have nominated you for the Silver Quill Award. You mean so much to me, so I hope that you will accept this and to carry on by following the directions within. Congratulations from me to you Viveka!!!!


  14. Oh, Terry, I am so sorry to hear that Al is in the final stage of his horrible dsease. Just know that God is with you and so are the prayers of all of us that your words touch and inspire everyday.
    Love and hugs, Barb.


    • thank you Barb. I sort of guessed but hearing it from the doctor’s mouth, made it real. I busted butt today, cleaning the house, getting Al’s room all put back together, and working on some of his clothing, fading summer out and winter in


  15. I am also a caregiver for PD. My husband has Young Onset PD since he was 16 yrs old. I know how tough it gets, but I can’t imagined what you are going through now. Keep it up! Make him smile and love him so much.


  16. Thank you for posting on my blog, Terry. I, too, am dealing with PD in the family. My husband has had it for 7 years now. It is an insidious disease. I will return to your blog often.


    • i think it helps for us who suffer or have others we take care of who suffer to all stick together. we can bring comfort to each other. so nice to meet you and please stop by or comment or just chat anytime!


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