I can not figure out why every single day, Al gets up, faceless, motionless, speechless, nada, nothing, zero.
He stares and acts like he is moving out of habit. Many times during breakfast, he struggles with wiping his nose and crying, and all I did was say good morning to him.
He has wild dreams most evenings. In my baby monitor, I can hear screaming, cussing, yelling. I often wonder how he can not remember these in the morning, but it is probably a good thing he can not.
After he eats breakfast, he either gets a shower or comes to the living room and turns on the television. Promptly at 11am, he returns to the silence of his room, and then at 1pm he heads out to the living room, cuing me he is ready for his lunch.
He never unloads or loads the dishwasher anymore, which I guess it is alright, as when he does by chance do this, he places the dishes backwards and silverware is stuck in at right angles. I just have to go behind him and change. I don’t know what causes him to forget how to load the dishwasher after many years of practice.
The staring is sort of scary. He can say something to me, but his eyes do not blink, and his face will stare at the floor, but yet I know he hears me, because he responds in his own way.
Today, he told me he didn’t know how to use a toaster, that he had never used a toaster. What?? You have used toasters forever, I thought to myself, but I took his waffles and placed them in the toaster, like I had always done it for him.
I am struggling with the freezing part. How do I help with this? Do I move his legs, do I wait for his legs to move on their own? I talked to him about restarting his exercises for his body, but he wants nothing to do with any of it, as his legs are his biggest complaint of pain, so no touching, he says.
I give him his medication for pain around the clock, not missing any does, and not even asking him anymore if he needs one. I hear from him the medications only help a small bit. He has been placed on different pain medications and had upgrades of doses, but we have not found one that actually takes his pain away.
These tiny little things make huge changes each day, and I don’t know how to help.
Toastmaster industrial-grade toaster, capable of toasting sliced bread and bagels. (Photo credit: Wikipedia)
Who I am 
The staring may be due to the muscles in his eyes being effected by parkinsons my daughter had eye problems when she was little and needed glasses to train her eye muscles to work properly together it may be worth a trip to the opticians as she used to stare into space when she wasnt concentrating to make her eye muscles work properly
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i thought it might be from the Parkinson’s as i guess from googling it is part of it. he has non perfect eye vision from his heart attack, so can’t see smaller things. just had him to the eye doctor before christmas. i can’t imagine him playing me all the time but………….
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Terry, this with the toaster … I think it’s just him playing up – but of course I can’t be for sure. Have a feeling that he knows that everything will be done with you – so he can’t be bothered. You should tell him to help out with the dishwasher .. or he has to eat on paper and see how the reaction will be. You have spoiled him and I know it’s not easy to not do things for him.
Regarding the eyes – maybe a visit to the opticians is what is needed. Feel so for you, going through days like this … one day after the other.
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he does not have good eye vision, because of the damage from the heart attack. as far as the toaster, i am not sure. he sure acted pretty sincere in telling me he didn’t know what a toaster was, so i don’t know. maybe it is the dementia part of the Parkinson’s too. i just don’t know. he eats on both, dish and paper, so he just don’t care as long as he eats, he doesn’t seem to care about much of anything anymore, which is not the way Al always was
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So sad … it must be for you – maybe it’s just a phase – all you can do is wait and see … and challenge him a bit. I suppose that know that you have a illness like Parkinson’s will change everything. Have a friend to a friend – high up inside Volvo and he has been diagnosed with Alzheimer. Hopefully he will be able to work for an other year – then he are a pensioner. Fuck, life isn’t fair … and it’s not our fault – so who’s it. ???
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i wish Parkinson’s would just disappear off the map. i hate it, and i m always guessing
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Are you sure he only has Parksinson’s Disease? http://www.lbda.org/node/7
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he is also mentally challenged, mild, and has a little showing of dementia but not much
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he is a heart patient also
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My brother goes into the bathroom to pee and then says now what do I do? Yikes! Dementia is so much fun. I quit writing about it for now because I’m not sure I want to think about it or remember it. It is what it is. That’s all I know for now.
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my brother goes into go pee and sits and sits and waits for it to happen, i am sorry if my writing about this disease has upset or brought back memories for you. for me it is the only way to get through each day, since it is him and me only
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There’s not much I don’t think to do other than what you’re doing….taking one day and one issue at a time. It is too bad the pain meds aren’t working…take care…Diane
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they help some but not enough according to him, but i know he is in pain most times
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Thinking of you and all you and Al are going through each day, and lifting you to Jesus. God bless you and guide you!
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thank you my dear friend for all prayers
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Terry, one of the side effects of Parkinson’s medications, not the pain medications, but the dopamine medications, is depression. In my professional nursing as well as personal experience, it seems that he may be suffering from depression. What you describe certainly indicates that. What is he on for Parkinsons? Check the side effects. It may be that he may need to either change the medication entirely or change the dosage. Please, please check the medication, check the side effects, talk to his doc.
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he has been on all three of the Parkinson’s meds, but they make his tremors worse with lots of drooling so drs. took him off. he has been on so many depression meds his whole life it seems. two months ago he was taken off most of his meds, except the ones he has to have, heart and b.p. meds, and his pain pill. he is a PRN with most of his dr.s now except family dr. as no one says they can help anymore but to just b there
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Thats awful Terry, have you no support system backing you up at all? Here is OZ they don’t just keep an eye on the patient, they also monitor the carer. The ability of the carer to cope with the patient is of high priority because they are the one’s that must be able to function under pressure. If the patient becomes violent or regresses to a point where the carer cannot cope anymore other programes are there as back up. It sounds to me like you need more help. Even if it’s just a break i.e. “Time Out”, Someone takes him for a few hours (whatever) to give you a chance rest. Telling you to “just be there” is not good enough.
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there is no support here for Parkinson’s. I have a caregiver who showers Al and another caregiver who was to come here in day hours to relieve me but now can only come in early evenings, but i need someone thru the day hours, so no one really is here
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What about a Parkinson/mental health group. Do you have anything like that? Carer’s meet and discuss their issues and help each other with time outs etc. If you don’t have one perhaps you could create one. Put an ad in the paper and ask if anyone would be interested in starting up a support group. There should be groups on the internet too. If you are isolated you could try that instead.
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i have found a few places on the net, like the Parkinson’s foundation, but they never get back with me. i have been on some blogging sites that deal with this illness but it goes no where. starting a group is a good idea. i will look into this, thank you. if you have cancer here, there is plenty of help everywhere, but not for this
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Looks like you might have a mission. I don’t know where you live but surely you can’t be the only one in your situation. Reach out you may be surprised. Prayers and hugs to you Terry.
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you may be right, thanks for the idea!!!
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The staring is partly because, like Anthony, Al isn’t blinking but it’s also a little bit like what one dr called ‘brain freeze’. Sometimes Ming and I call it ‘shark eyes’. When Anthony’s legs freeze I say 1,2,3 and ask him to pretend he is stepping over a log – or sometimes I just wait for him to unfreeze – argh. I know what you are going through. Oh yes and Anthony didn’t have nightmares at home but he did have vivid dreams – all part of the disease I’m told.
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although i don’t like to know that you have suffered through this with Ants, I do like knowing that it is part of the disease, and somehow this brings a tiny bit of comfort to me. today he has been very good, and i have barely seen any tremors. where did they go??????
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Isn’t it weird how the disease is different from one day to the next despite the same meds – I don’t get that.
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that is the craziest part of the whole illness in my eyes. there is no stability even with the bad things………………
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you’re doing all that you can to help him! xo
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yes i have to agree, but i can only do so much. i am going to start researching nursing care homes so when the time is right i am prepared. i want him to be happy and i think that it is getting near time for him to be around others like himself instead of sitting here in his room mainly alone with just me
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he may just thrive in one, i know my Grandma when she was quite sick had the time of her life in a hospital ward, because she was hanging out with others. it was almost comical. i know you must feel helpless though and i just wanted you to know from an outsiders perspective that you do a lot for him and you are probably hearing in your mind it is not enough where it is. xo
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you know me pretty well…………..i always feel there is just one more thing i can do to make things better……………..
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Terry, I have sent you an e-mail with some suggestions. I hope you get it OK.
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i will go check!
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i will go check!
I did get it and I will read it here soon, and then I will ask his doctor if he can have this, only because he is on four heart medications and three blood pressure medications, but it sounds like something i would love to try for him. thank you so much for your help. god bless you!!!!
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The tremors will eventually disappear, the freezing up stays. The only thing I have found is to gently tell Momma to relax, and settle down. We do have a song we sing (Dad and I) “Breathe in through the mouth and out through the nose, breathe in through the nose and out through the mouth, keep those feet a moving, and breathe. then we kinda go into you are my sunshine, my only sunshine, the one who needs to breathe out loud, keep those feet moving my dear, we love you, please don’t stop, your movement right now.” It might sound goofy, but it works for her. You will always have good days and bad days, but I have figured out, it’s not mine to question, it’s only mine to make it better.
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i have noticed the past two days the tremors are not as terrible as usual, i actually saw him sitting for almost an hour with no tremors, but now they are back. i love the little song, but what i am hearing, is i can kind of coax him into concentration to move his legs without actually moving them. i will try this. thank you Jo!!!!
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I’m continuing to pray for the Lord to grant you wisdom, patience and strength. Everday is a new challenge for you. May He continue to show His presence to you and Al CLEARLY as you continue to struggle with this affliction. Lord bless.
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thank u Rob!
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My mum has Parkinson’s, she’s had it for the last 18 years, my sister is her primary carer. The starring is normal, not quite sure what causes it but it is a recognised stage, along with the running man walk, where they stoop over and shuffle. It’s a truly awful disease to cope with both as a sufferer and as a carer. My mother now has Parkinson’s Dementia she’s 82, with this and bouts of depression it’s quite hard to deal with but you have to be there for them. Depending on the stage and acceleration of the disease you really need to get some specialist help with the medication balance, (for shakes and movement). It always surprises me how little is know about this disease as there are some very high profile people suffering with it, especially from medical professionals.
The tremor’s are an element, lack of movement, impaired speech, starring, expressionless face, stooping, hallucinations (drug side effects), my mum doesn’t shake so much any more she fidgets and ‘punds’, it’s like a repetitive movement with her hands, a bit like stroking a rabbit, it’s hard to describe. She can no longer walk, she’s prone to falling and has little to no grip. Later stages include difficulty swallowing, so at this point softer foods is required and the risk of choking is higher. People with Parkinson’s can live a long life and the rate of progression can be very different, it’s only in the last 6 years that mums movement has been quite bad, the last 3 after she broke her hip has meant she’s confined to a chair for mobility. We have taken her swimming, which she loved as it relaxed her muscles.
I have read that coffee helps with the movement but haven’t tried this with mum, she’s with it enough to know she’s a tea drinker.
I hope some of this was helpful and hasn’t frightened you too much.
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i am having to start to help Al stand, and he freezes almost every time he gets up to walk. he picks a lot at his skin and head, his fingers tap each other. his tremors are from the chin down. he shuffles and trips over his own feet. he is very slow, and weak. he can not get the ice-cream out of a bowl without help. he is starting to stutter when he talks and can’t seem to get the words out as well as he could even last month. he has progressed rapidly, only being diagnosed in 2010. he had a big seizure in the frontal part of his brain where Parkinson’s affects, and it kicked in almost immediately, one year ago he did not even need a cane, and now he can barely walk. he is very depressed and cries constantly each day and complains of constant pain. he sleeps little at night because of tremors and pain. i feel so bad for him, as i sit and watch his life slip away
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I admire your commitment to your brother. the dementia is always puzzling to people. imagine you wake and suddenly things look completely foreign and the people around you insist that you do know what you are sure you do not know. even though neuro-science and psychology are my field i didn’t truly understand this until i experienced it. after surgery a few yrs ago my blood pressure dropped and my language was effected. the words in my head and what i thought i was saying was not making any sense to anyone else. it was so frustrating! the look on the staffs face said it all. fortunately a few hours later things were back to normal. this singular experience has been invaluable to me.
having lost loved ones, even as recently as june, each experience is different and yet the same in so many ways. now being the one leaving rather than the one watching i have come full circle.
i do want to share with you, though this is probably not new information, when someone is dying it is natural to pull away from those we love. it is because we love you that we have to start the process. just take care of yourself and remember that just because someone is dying does not mean they have the right to treat you with disrespect.
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i am so happy that you took the time to leave me this comment. you have helped me understand what is happening to Al. i can see more clearly now that he is keeping his distance for reasons that i didn’t know. he must be so scared, i would think, although i am here for him, it is not what he truly needs. he keeps telling me he wants to go home to heaven, maybe he knows something i do not. thank you so much for you help in explaining this to me. god bless you
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