wings and things

Parkinson’s disease dementia and life expectancy

on April 27, 2014

Okay so I googled this today with a mixture of guilt and curiosity. In watching Anthony’s physical and mental abilities diminish over the last year, I have become increasingly concerned that (a) he will become very depressed; (b) his confusion will cause him anxiety; and (c) he will suffer physical pain.

Some of these things are already happening of course but, so far, he is not in physical pain and – remarkably, in my opinion, – is not depressed in any clinical sense. He is plagued by bouts of immobility and incontinence but we have both accepted these aspects of PD. Recently, however, the confusion of dementia has caused us both anxiety. For example, if he is home for the day, he will often talk to Ming and me even when we aren’t in the room. And sometimes, in the nursing home, he will think we are all home on the farm, and can’t understand where Ming and I are going when we leave him.

It is over seven years now since Antony’s PD diagnosis, and just over two years since he has lived in the nursing home. He is sad a lot of the time, mainly because he misses me, Ming and home, but mostly he is resigned and heroic in the way he has accepted now that he is too heavy for a single person to lift (in and out of bed etc.)

As much as possible, I have tried to inject a daily dose of joy into our equation but sometimes that isn’t enough and visiting him yesterday with my youngest brother and his youngest son, although wonderful, gutted me when we had to leave him, leaning on his walker, waving goodbye, with two nurses ready to take him back to his room.

How long will this go on? I catch myself wondering if sudden death would be better than this excruciatingly slow journey into an illness that has no cure, that ends with severe dementia, and that robs us of the energy we once had to adore each other. Of course the love is still there – maybe more than ever – but it is no longer a gleeful, adventurous, exciting love; it is more like a needy, obligatory, remembered love – not quite real in the here and now.

My grief and love for Anthony are in equal proportions and every single day it’s as if they draw straws to see which one will win – usually love, but not always….

27 responses to “Parkinson’s disease dementia and life expectancy

  1. Vicki says:

    Sometimes i wonder if the person(s) left behind (you & Ming), suffers more that the patient (Anthony).

    I suppose the only consolation is that in the last stages of dementia, the patient doesn’t really remember what he/she has lost, so in a sense, one (Anthony) will be set free of his suffering and grief.

    But you and Ming will always remember the past and what/who you have lost. I don’t really know if this is a good or bad thing (having never been in your shoes).

    Big Hugs

  2. Watching a loved one decline gradually is so hard. It was my mother and you of is your husband and it is different because you have that element of the physical aspect as well as the emotional. Grief and love… With the length of time it went on it got so sometimes I just didn’t want to visit … I knew I should but facing the sadness and as you say grief just plainly wore my emotional being to the core… When this happened sometimes I didn’t go. .. I couldn’t go daily of course because of the distance and working but on the Sunday I would normally go. Guilt would then wear at me… but guilt is not right.. It’s useless. I had to come to the conclusion that when those times would come, it was okay. I’m not suggesting that you not go of course..just that in my case for some of that time I was in ‘depression’ and was fighting that battle as well…..But I think for anyone that has a loved one in these circumstances, they have to take care of themselves as well as the one they love. … Just a rambling thought…. Diane

  3. I’m glad that you can say ‘usually love’ at the end there Jules…with my mother, though i feel guilt even thinking it/saying it…we are waiting for sweet relief really. It’s physically exhausting, mentally draining and she’s not having any fun either 😦

  4. Julie you write so honestly. So intensely about the truths. When I go in to homes and nursing facilities here to speak to families I can “see” in their faces what you just wrote. I respect and appreciate you putting words to what I see. And I can’t begin to imagine this that you feel every single day. Blessings on you, and Anthony, and Ming. And everyone who loves you all.

  5. Hugs Julie. YOur vulnerability and honesty are heartbreaking, and touching. You are so incredibly brave and loving. Blessings to all of you.

  6. Judy says:

    Dearest Julie, every word you wrote echoed my own feelings watching my mother decline with dementia. I didn’t want to remember her that way! The torture of this is unbearable and my heart aches for you. You are in deep grief watching him slowly die. I think that is worse in many ways than anything else. It’s difficult not to anticipate the end when it is so hard. All you can do is what you are already doing. Keep expressing all of your feelings because that way you can get the support that sustains you. Feel my hug!!

  7. How well you articulate your journey, Julie. You have captured some of the feelings I had when my mom was going through Alzheimer’s, and even the heartache of leaving my dad each time when I visited him in his fight with ALS. No one really knows how hard it can be unless they have gone through it with their own family.

  8. Oh my beautiful friend. I can’t imagine any of this is easy for anybody. PD is such a cruel disease. My thoughts and prayers are with you. ((((HUGS)))))
    Diana xo

  9. granny1947 says:

    That was so brilliantly written.
    I ended up with tears in my eyes.
    I can’t imagine the pain you must be going through.
    A huge virtual Granny hug coming your way.xxxx

  10. Oh Jules, this was so very poignant, honest and beautiful because of your talented way of writing. I am sending you, Anthony and Ming the biggest hugs 🙂

  11. Oh Jules, love like that shared between you and Ants is rare these days . I am so glad you can both carry that love in your heart everyday. I know just prior to my mother passing, the dementia had her so lost she knew none of her six children, but the day she passed she had a brief bout of clarity and we all were able to have momma for one last time. It was very hard though to remember in the times preceding that it was the disease that made her act and say the things she did and she didn’t really mean those mean things. I know you will keep your love and caring for each other as long as necessary.

  12. Any kind of dementia is very difficult for the patient and for those who love him/her. The not-so-nice side of life.

  13. Luanne says:

    Julie, I’m so sorry for what you all are going through.

  14. I went through this with my mother. The roller-coaster of emotions is endless. Nothing easy about it. My heart’s with you.

  15. Terry says:

    I don’t know what the answer is. There were so many times as Al got worse I was confused. Everyone thought he was going to pass at Christmas. The longer he stayed the more emotions swirled. Thoughts of letting him go, begging God to let me keep him were a constant battle in my mind. The tug we have with others because of love can play havoc on our minds and bodies as we fight and have to see what their illness is doing to them and to our own families. Today, i sit in quietness. I don’t hear Hospice, or nursing homes or see the busy days of caregivers here. I beg for mercy from God as I wish with all of my might that Al was still here for me to just see, touch and hear one more time. My earthly feelings are much stronger than the right mind thoughts. I miss him so bad, so I guess in the end all I can say is. Life will be tough and it will get harder as he progresses. But mentally, or with pen and paper, jot everything down, good and bad. Savor them like a fat piece of chocolate cake when it is over and Ants no longer forgets anything. Your love for each other will be what shines through like the brightest star of the night. Hugs and love dear Julie

  16. tootlepedal says:

    Hard thoughts to have floating around in you mind. I hope that you can get the occasional break from them.

  17. I think those of us who are not suffering from dementia suffer more than those who are infected as we have to watch our love ones fade away from us and drift into a state of just existing day to day and not living. It is heartbreaking to see someone who was once full of life just laying there not knowing what day it is who we are unable to speak much saying only a few words here and there.

  18. bulldog says:

    How to comment on such a post is so difficult… the realities are that the sufferer is sometimes protected from the traumas by dementia… however the non sufferers have to face the memories of time past and how they handle this is different from individual to individual… you will always have the memories of the good times mixed with the difficult times, but in my case where Dad suffered so in his last six months of life, were soon forgotten and only the good times remain uppermost in my mind… the realities of life, sometimes very difficult to understand… Sterkte…

  19. Judith Post says:

    Our family has watched way too many people die. My dad had multiple myolama (sp?) and at first, they could clean his blood a few times a year and return it to his left arm, and it wouldn’t thicken up with proteins, etc. for a long time. But then the periods between cleanings got shorter and shorter. My uncle had cancer. My mom has Alzheimer’s. I think that’s the hardest, because their mind goes before their body. All prolonged deaths are hard, but the love remains if you concentrate on that. It’s hard some days, but you do a beautiful job of it. All of you do. Hang in there.

  20. Ann Koplow says:

    Amazing post, Julie. Look how you are helping your readers, as you express yourself here. Thank you.

  21. Sudden or prolonged, it is just plain hard. 😦

  22. FlaHam says:

    Julie, You continue to amaze me, the strenght of your love for Ants is beyond scope. You and Ants, as well as, Ming have dealt with this disease with such love and grace. I understand your wonderment thinking that a sudden death would serve all. The progression of any disease is what beats you down, Ants is lucky to have your love, and I know you will continue to cherish each minute you have together. Take care, Bill

  23. viveka says:

    Julie, I understand where your thoughts are coming from – I thought the same for mum for months, before she made up her mind herself .. and gave up – and when she decided enough is enough it only took 5 days.
    And I was there .. so I could see what a relief for her it was not to have to carry on fighting and that has helped me so much in my grief. I think we will all know when it’s time to leave .. in some way. Even if we are in an accident … I think it’s down to use if we will let go or not. This is only my way to look at it.

  24. Wow. That was so beautifully and power said from your heart.

    I can’t seem to find any words to say except I hear you.

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