I have written on many topics in the last few months. Some poignant, some funny, some expressing anger.
So now, I would like to know – what kind of things would you like to read about regarding my experience with FTD?
Over the five years that my husband and I spent tackling this heinous disease, we went through many trials and tribulations. We experienced what it is like to move through a broken healthcare system. We saw love and compassion from complete strangers, we saw greed and indifference from others.
Obviously, my experience with Frontotemporal Degeneration was singular and unique. Yours will most certainly not be exactly the same. But what I -we- saw, did and had happen to us can hopefully paint a picture for you. You could perhaps, use it to help you decide on which path to take through this disease.
Some things that come to mind are practical issues-food, incontinence and sleeping. Or perhaps end-of-life-issues, about which I have some quite strong views and suggestions. Personally, the biggest challenges for me were not of a practical nature, more the emotional stranglings that take place when your spouse is slowly being dragged from you.
Anyway, please feel free to suggest whatever is on your mind. Have a wonderful weekend –
treasure every minute……..
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FTD - Aspects and Experiences of Frontotemporal Degeneration 
Dear Deborah – this offer is very thoughtful, espcially now that you are emerging from the trauma of FTD. I guess that once one has experienced its nightmare, from diagnosis through deterioration – to death, the reality of living it never leaves. I would like to think about your question and get back to you in the New Year. XXX
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Thanks Toni, I appreciate your time and thoughtfulness. I hope you have a peaceful and loving holiday with your family.
All the best,
Debbie x
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I would be interested to know what, if anything at all, really made a difference, i.e. helped. Anything, big or little that made you relax for a moment, or feel able to accept what was happening, or just get through the day.
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Thanks Hilary.
I will be working on the replies over the next few days. I appreciate your following and frequent comments.
Debbie
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I wanted to let you know how much my family appreciates your blog. We’re blessed with a close knit family. Everyone tries to help in some way. I’ve quit my job to care for my husband full time. I’ve promised to never put him in a home. His worst nightmare. I truly believe I can care for him the entire time. Am I fooling myself?
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Thanks so much Kim. I commend you for your heart and love.And thanks for following my blog an Facebook page. It’s nce to know someone’s actually listening! I will be working on the replies in the next few days. In the meantime, have a peaceful and loving holiday.
Debbie
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I don’t think its a matter of “fooling yourself” Kim. It’s an honorable and noble thing to do and I commend you for your courage. I can appreciate that you know it would be your husband’s worst nightmare as I’m assuming he told you that at some point. I know people who have done it and done it well. Realistically, you have to be prepared as time goes by to be exhausted and frustrated at times. I was not able to do it as I had to continue my full time job as it was our only source of income. There did come a point anyway when I could not take care of my husband as he became violent and uncontrollable.
what I can say about your caring for him at home is that while it is admirable if you are able to, please don’t be disappointed or feel guilty if it doesn’t turn out to be possible all the way to the end. I don’t know quite what stage your husband is in right now, or even what his diagnosis is. But if I could only give you one thing to consider, it would be to just take each day as it comes and be prepared to change plans, dreams and wishes in a snap.
If you do have to place your husband in residential care, it will not be because you are going against his wishes, but that you are unable to care for him any longer. He would not want to put you, him or anyone else in danger and would, if he were himself, want you to do what is best for everyone. By the time that point arrives, he will no longer be aware of where he is and what is happening anyway. Then the emotion will be all yours. How you are able to handle it will be the test really. It sounds like you have great support, as did I. But at the end of the day, the decisions will all come down to you.
I wish you well on the next part of your journey. Thanks for following my blog 🙂
Debbie
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Thank you, Debbie. Your right. One day at a time. The good, the bad and the ugly. My husband was diagnosed one year ago at age 52 with Pick’s disease (FTD) The doctors think he’s had it a few years. It’s a decision I hope I never need to make. The only thing I don’t think I could handle is if he became violent. He’s a very loving person. Again, thank you for your blog. The whole family looks forward to it.
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