Thursday, June 12, 2014

A long, long Journey

It has been a long journey. A long, long journey. And our baggage is getting heavier. I can't carry it any longer. I have to drag it behind me now. And the edges of the cases are becoming ragged and worn. What once was just an easy day has become a day filled with strife. And sadness. And many hard decisions to make.

I am talking about our journey with Hospice. And Parkinson's disease. Along with the dementia. It is an over-whelming journey. One with few rest stops. We just keep going and going and going. 

Richard's joints and muscles are becoming stiffer. Harder to move. They don't bend the right way. His legs no longer support his body. He no longer stands up straight. He can't move his arms very far away from his body. He can't reach a glass of water that is right next to his chair. He cannot turn himself in bed. He cannot sit up alone. He needs support. And he is stiff. Oh so stiff. It hurts him when we move him. And I don't like the grimace that shows on his face. I hate seeing him in pain. He has the typical look of a Parkinson's patient. His face is expression-less. Like a mask.

Last night he didn't sleep. He coughed. He produces a lot of saliva and then it chokes him. I was up raising and lowering the head of his bed. Offering drinks. Administering atropine drops (which help to dry up the excess mucus). Nothing much helped. It is just what happens. So this morning we didn't get up at our usual time. And now he sits at the table with his breakfast in front of him. He doesn't know what to do. I had to walk him through each step of brushing his teeth: rinse your mouth, take out your dentures, pick up the toothbrush, put it in your mouth, rinse, spit and on and on until that simple step was complete. And now we are doing that with his breakfast. Step by slow, agonizing step. Breakfast will take hours today. Some days it is like that. He gets stuck (frozen) and he can't move. Then I will take over and feed him. He doesn't like that. It makes him feel bad. I understand that but you can't take 4 hours to eat a simple bowl of cereal. 

He sits at the table with his head bent forward. He picks at the napkins. He touches then and tries to pick one up. If he manages to get it picked up, he folds it and unfolds it just to refold it again. He stares. At what, I don't know. He drools. It drips from his lips to his chin. His eyes are glazed over. What does he see?  He sometimes answers my questions. More often he is quiet. His speech is so soft. And slurred. And very hard to understand. We ask him to repeat things often. So he does. In the same soft, slurred and quiet voice that we didn't understand the first time.

Few things perk him up any longer. Knowing that Justin (our youngest son) is coming will perk him up. Having Darian (our grandson) here helps too. Darian has been gone a great deal of June. He had Boy Scout camp and now is gone to wrestling camp. That changes Richard's schedule. And changes for those with dementia is never a good thing. He sits for hours in his recliner with the TV on. He stares at it. But I can tell he is not engaged in what is on the screen. He doesn't follow the story-line.
He doesn't follow our conversations. 

I can't take him out in the car any longer. I cannot lift him from the wheelchair to the seat of the car. We can manage it when Darian is here. But it is very hard. And my fears of dropping him are great. He loves to go for car rides. But that is a simple pleasure that we can no longer do. If fact, most of the SIMPLE pleasures of our lives have become great struggles.

He didn't want his pills this morning. And does it really matter? He takes pills to take off the fluid...that in his hands and feet and in his lungs. He takes pills to help with bladder spasms. He takes pills for acid stomach. And pills for prevention of bladder infections. He no longer takes heart pills or pills for his thyroid. Or blood sugar pills. Or pills for Parkinson's. We gave those up more than a year ago. He takes pills for sleep and pills for depression. And then there is the liquid morphine and the anxiety pills. Do any of them really matter anymore? Maybe the Morphine and the anxiety tabs and leave the rest off for a day or two. Constant decisions to be made on his behalf. I can't find anyone to help with these decisions. They don't have much to offer. They say it is up to us...meaning me. I am tired of making decisions. I am tired of all of this. I am tired. 

30 comments:

  1. I am so sympathetic for you. I kept reading your words, wondering what would come next. Your writing is beautiful, but your story is sad. I am glad you are writing as I sense that it helps you cope. I stopped reading for a moment to get myself a drink, and as I stood, my tears came. They are tears for you, your husband, and your grandchildren. I think Darien is a special child based on the many things I've read that you have written about him. God has placed him (and his sister) in your home for this reason I believe. I know it can't be easy for a grandma to raise two young children, especially while caring for your husband. But what a blessing to have them as helpers and to also have them close so you can experience the joy of your grandchildren up close every day. I wish I had some words of wisdom, but I do not. I wish I could make this easier, but I cannot. I do know that God will help you through. Lean on him and pray to him every chance you get. Know that I am thinking of you and praying for you daily.

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    1. Yes Fancy, I have said the same thing many times. God put these kiddos here with me for a reason. And they are learning the real meaning of family, that is for sure. Thanks for all your kindness.

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    2. My daughter learned the meaning of family as she often helped me in caring for my father. She was his favorite helper!

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    3. It is good for them. I tell them it is how it used to be done...before so many nursing homes sprang up!

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  2. My father refused his Lasix (for congestive heart failure). I tried sneaking it into his food just to see if I could, and I succeeded. I then had to debate the morality of doing so. On the one hand, he was showing signs of dementia, but on the other, he wasn't so far gone that he had no idea what the result might be. I asked myself what I would want done if it were me (even if I were so far gone that I couldn't understand the result of my decision), and I decided that I would want my wishes respected. Either a person knows what he is doing, and therefore has a right to do it; or else he's so far gone that he doesn't know what he's doing, and therefore has no quality of life that makes his life worth sustaining. The caretaker's decision about whether to honor these wishes is sometimes made more difficult either by guilt or else by the anticipation of feeling guilt later if she decides that her decision was wrong. I have never felt that my decision was wrong because it was consistent with my values, and it was consistent with his best thinking and his expressed wishes. I have every confidence that you are doing the very best you can for your husband, and I know that this must be far harder than you than my decision about my father was for me, yet the decision itself is somewhat similar because in each case, we had the power to prolong another person's life, whether by days, weeks, or months, and we were obliged to decide whether it was right or wrong to do so.

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    1. Thank you Snow.....I know that you completely understand exactly what I am going through. I hope that when it is all over I feel no guilt but only recognize that I gave him the best that I could give him for the quiet peaceful days that he so craves.

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  3. I have read this, your incredibly poignant description of what is basically your morning with your husband, and the tears come. How could they not. So, after taking a few deep breaths, I wonder about the practical side of things. I don't know if this depends on where you live, but have you looked into home hospice care? We live in California and when my father-in-law was dying of cancer, he had that. And the people who came to his home were wonderful and caring. And he was able to die at home. I don't know if this is available where you live. I wish it was, because it is clear to me that you need help. Not later, you do need help now. Dear Paula, please take care, I will keep you in my thoughts.

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    1. Yes, Inger, we do have Hospice involved. But the nurse only comes once a week. She is very kind and a good person to vent to. But when the going gets tough, as it often does during the middle of the night, it is me making the decisions.

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  4. Such a moving post. I really feel for you and wish I could do more as I'm typing. I can only offer an ear to listen if you need it, this blog is great for you to document your feelings and hope it helps in some small way xx

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    1. That is exactly why I write Arline. And I hope that it helps others who are in my position to know that they are not alone. We all feel this way at some time or another.

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  5. Oh Paula, please know that we love you and support you. These are hard decisions that were placed on our shoulders and it does make you bone tired.....body, soul and mind.....hang in there.

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    1. Thank you Kwiz....sometimes that helps more than you know

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  7. Ranci expressed my own feelings so beautifully. I can't escape the realization, any of us could be similarly affected tomorrow - either as a patient or a caregiver. All I can offer are my prayers and, of course, a hug!

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    1. That is so true...you never know when it can happen to you! Don't ever take your

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  8. (((Paula))) I feel for you; you have been on this journey for a long time and like you said, I am sure you are very tired of it, but know you want to continue to do the best you can for your husband. I do admire your continued efforts, lots of people might have given up by now, but you keep plugging on the best you can.

    betty

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    1. Thank you Betty. It will never be my intention to give up. I have promised him to take care of him until I can't take care of him any longer...I hope that day never comes

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  9. Dear Paula - I cannot offer practical advice, sadly I cannot help .. but I so hear you - and sincerely hope someone will hear your plea and cry in the darkness of your long journey ... and give you some help, support, guidance - all the things that you need - with many thoughts and lots of hugs - Hilary

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    1. Thank you Hilary. I go get help. My son comes and we have Hospice but the burden of watching it is all mines. The others don't seem to see what I see. Or get it

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  10. Your journey is torturous. Harder than I can imagine. So hard for him. Just as hard for you.

    A heart attack! That is my hope for my own passing.

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    1. A quick and deadly heart attack. Not just one that cripples...that is my wish!

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  11. Even though you have loving family around supporting you, it is a lonely journey for the main caregiver. I understand about the decision making. That is sometimes the most difficult aspect to deal with. I remember you mentioned in one of your posts that Richard always thanks you. I know that may not always lighten your load or ease your exhaustion, but perhaps it may re-enforce your understanding that your are doing the best you are able for this person you love so dearly.

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    1. You are right lyndagrace. It is a lonely journey for the main caregiver. But, thank you for reminding me that he does appreciate all that I do for him. Most of the time, he is on the journey with me. It gets hard when I feel I am losing him, becasue then I am alone.

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  12. I am so sorry this is happening. I hate those morning more than I can say. I don't understand why there aren't more services for families who choose to keep their loved ones in the home. For me, it's to keep her safe. Mom is so vulnerable. She could be abused or neglected so easily outside my home and if I had to use all of her SS plus more of our $, I would have to go back to work and wouldn't be able to be with her every day. It is a crime that all those people who set the guidelines don't ever do their homework when it comes to the debilitating diseases that aren't cancer. I guess I'm frustrated - I know you are too. Know that I am thinking of you and those beautiful grand kids every day. Hugs to you, my friend. God bless you.

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    1. You are right Lisa. There seems to be so much more help for other diseases. The disease of dementia doesn't get as much attention. We have Hospice. At least I am grateful for that. I wish that you could get Hospice too. But there is only so much Hospice can do. I am the one that is here 24/7 and I have to make the decisions for getting more help. That is why I keep Richard at home. The neglect and abuse that I have witnessed in the nursing homes...and everyone turns a blind eye..is not something I want him to have to go through

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  13. I am sorry for the struggles you face. I have no words, really, only that you are in my thoughts and prayers during this difficult journey.

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    1. Thank you Jeanette. You thoughts and prayers are enough.

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  14. Although we never met, my heart is heavy reading how burdensome life has become for you, for him. Hold on and try not to get overwhelmed. What you are dealing with is so heavy.

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    1. It is heavy. I try hard not to become over-whelmed. Yesterday was just a hard day! Thanks for reading. It helps me to write about it

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