Helping Those Who Care for Parkinson's Patients
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Today is a really hard day, and I am coming to what feels like my Parkinson's home to process and to mark this moment. My husband, who has not died, is quickly dying to me. His physical health is excellent; his dementia is progressing, and it is leaving him too often afraid and agitated, worried that I am abandoning him. Sadly it seems that his fear of abandonment is triggered, by my presence. He has told me, repeatedly, that when I come there he spends the whole time wondering when I will leave. On the other hand, much of the time that I am not there at his assisted living program, he is comfortable and content. He goes on outings, interacts with the other residents, helps out with small chores and is engaged and unafraid. They have asked me to agree to the addition of an anti-anxiety medication (Ativan) to the small list of meds that he takes (C/L, medical cannabis and an antidpressant). I've agreed, because I realize that he deserves to have his days free of the worry that I no longer love him, and the fear of being abandoned. I feel like he died. I realized just today that in some small part of my mind I still, still, think that he doesn't really have dementia, and that somehow he will be back. Of course, if I read over what I've posted here for at least four years, I can't deny that he has been leaving me for a long time, and that cognitively, he is now mostly gone. VV |
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Sweet Violet, I am so sorry you are having a difficult time. Saying good bye is hard and especially when there are so many ups and downs. Last Monday, I received a letter in the mail from a dear friend who sat with me, took me to the oncologists, therapy sessions, etc.—She has less than a month to live and was telling me good bye and remember her with a smile. She has only had her cancer for a few months, but there was never hope. And, only her husband knew. Then, two days later, Carl’s sister was taken to the ER in extreme pain and has since had two surgeries...she is still in ICU as I type! I tell you this because I want you to know that sometimes it seems the person who is ill manages to somehow subconsciously prepare themselves for their future. We friends or caregivers deal with deep feelings of regret or sadness that might go unresolved. All we can do is do our best to face our loss, grieve that loss, then come to accept that which we cannot change. Try not to be so hard on yourself. Your love is strong, you keep doing your best, and know that it is the PD, not your husband, that robs you of your life together. He knows you love him...he HAS to...WE know you do! When you see him again, give him hugs from all of us...we are beside you both. Love, Jane |
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Violet, I am so sorry to read this. It sounds like although you have known your husbamd has had dementia for a long time, it may not have been until today that you really realize what that means. I think we all have moments like this during the course of our journeys with Pd-we May “know” our loved can’t do this or that anymore, but it’s not until the reality of exactly what that means to us hits us in the face that we “get it”. I’ve had many a “bucket of cold water in the face” moments, as I call them, as I am sure most here have. I am always surprised at how raw I feel when they happen, and I realize I start the grieving process all over again each time. All we can do is let our PwP know how much we love them and hang on. I think you are handling things very well and hope that I can do as well when I am in the same place. I know it’s coming, I so dread it and worry about being able to hold everything together, but I know when I get there, I will have the kind and loving example of caregivers like you showing me the way. I hope you know how lucky your husband is to have you by his side 
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Thank you both for your supportive messages. I really needed that. I think the only consolation I have right now is that the deep grief that I feel confirms for me that I do love him, that I do care. I had been feeling that, having lost him so long ago and having released any expectations, maybe I was immune to feeling anything for him. Now I know better. I love this man I miss this man but the frail old person that I am responsible for and caring for, comforting and reassuring, is a shadow of my husband. It’s all just so bloody sad. |
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Hello Violet, I'm sorry you are having such a sad day. You are certainly a strong person for hanging in there and you are certainly a loving wife to face your feelings and continue to consider your husband's needs and feelings. While these days are not easy, I do wish you peace in knowing you are doing your very best during this trying season. ~Lynn |