When there is a Parkinson’s patient in the house, it is not a good idea to plan many things
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
Related articles
- Last Evening and Even Today (terry1954.wordpress.com)
- Tips to Help Parkinson’s Patients Move Through a Freezing Episode (everydayhealth.com)
- Sleep benefits memory of Parkinson’s patients (storagebedsdirect.co.uk)
wow that sounds like a busy stressful day. i’m sorry that Al is in this stage of PD.
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me too Buck, there are no other stages left
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i’m so sorry xo
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me too Buck, I whine, I complain, I am tired, but as the song goes……………he ain’t heavy, he’s my brother…….
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to watch someone you love suffer has to be one of the most painful things in life to go through. my heart goes out to you xo
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thank you Buck
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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.
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I sure will. I tell him that a lot of people pray for him and hope he has good days. sometimes i can get a smile from him with my words……….today was a big day for the two of us. i hope i get some sleep tonight. thank u so much for this great comment. i loved it!
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Wishing you both a few hours of sound sleep.
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thank you, i m soooooo tired!!
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You are a wonderful sister Terry and I’m sure Al loves you very much. Stay strong.
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thank you so much Cindy!!!!!! i so appreciate your encouragement!
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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!
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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
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I am so sad for you and Al in your stress. And grateful to you for sharing the story as it progresses. You have a wide world of bloggers supporting you.
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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
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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
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if they go with any stronger pain pills he will no longer be able to walk, so this is it, or a zombie, who may as well be dead then both mentally and physically
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You are doing really well rising up to this next challenge and make sure you don’t take on more than you can cope with.. you will have a busy day tomorrow.. take care.. c
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i hope that all this help for him actually helps me also, at least hoping. thank u for the encouragement!!!
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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.
Terre
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i had this crazy idea to go soak in my bubbles while these therapy people are here, would that b considered hiding??? LOL
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Love and hugs, Terry! This is so much to take in, in so short a time. Praying that His grace covers your and Al’s day tomorrow.
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thank you Debbie, Al is going to be drained tomorrow, so I can use your prayers
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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.
Shakti
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is your dad still living? I agree it is very challenging, and unfortunately, my nerves are shot a lot of the times
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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……
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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
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May Angels surround you, grace embrace you, and self-care always be with you. Ameeeen… Hugsssssss
Pink.
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thank u so much my sweet friend
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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.
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i did manage to get six hours sleep last night! i feel better just a big groggy. I think i need a few more hours of sleep, lol
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i did manage to get six hours sleep last night! i feel better just a big groggy. I think i need a few more hours of sleep, lol
I will let my brother know your comments
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Sounds good Terry 🙂 And I am glad you got a little sleep. I think I came in at about 4 hours, so you beat me!
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yeah! i won once, lol
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Brian, I was so exhausted I could barely hold my eyes open, since Al was out here in the living room, I snuck in a nap. i feel better but am looking forward to going to bed. i didn’t mean to sound like u and i were racing for sleep, it was a joke. we both need good sleep, in fact we all do in order to get through the days
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My love, thoughts and prayers are with you my friend. God will continue to get you through this. He will never leave us or forsake us. This is a big one…
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i think it is the biggest part of this disease, i need to know what the dr. said, and yet i don’t like it…….love and hugs my friend, miss you
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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
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thank you so much, i have to agree this disease drains both, the caregiver and patient. i wish i could wish it away. i so appreciate your kind words Missus!
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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
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bless your heart for this wonderful caring comment Missus…………..
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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
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bless you and hugs to you Patty. i accept the hug. I have talked to Jesus much today, in order to keep my stress down
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God bless you and Al
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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!
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i think this is the problem today, new therapists here, his familiar bed gone, his room rearranged, too much for him.
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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
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thank you so much Ken. i am so glad that we have found each others post sites. you are so very nice
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That’s kind of you Terry – best wishes 🙂
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My dear friend, Ken, you have been here for me so much lately, and I want to nominate you for the Silver Quill Blogging Award. I hope you will accept this and also follow the rules within it. congratulations my friend!!
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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 ..
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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
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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.
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i like knowing that you care, it is always nice to have someone out in the world who cares, isn’t it……………………hugs my friend
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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!!!!
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Terry, thank you so much – have to get my act together … I can’t catch up with the old .. so I have to start from this months. Hope you forgive me .. because you are the giver to must of them. *smile
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just enjoy it my friend…………u r so special, so just enjoy!
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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.
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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
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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.
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it is so nice to meet you Vow! That is very sad that your husband has had PD for so long, that is too young for such a terrible disease. My brother is now in the final stage, and I see changes that happen very quickly. I love him and will stick by him until there is no more sticking……….Any time you need to talk about frustrations or anything, just email me. tellmenolies2004@yahoo.com.
again, so nice to meet you
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what area do you live in?
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I’m from Puerto Rico.
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I am from Indiana!!
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I have nominated you for The Silver Quill Blogger Award
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thank you so very much for this wonderful award! tomorrow I promise to pay proper tribute to you. bless you and hugs
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thank u so much my friend!!!
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You’re a good looker-afterer, Terry. Al is very lucky to have you. What a horrible disease, though!
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thank you for that wonderful comment Butimbeautiful!!!! I do agree it is a terrible disease. It has a mind of its own and controls every part of the body and mind
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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.
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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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