Caring for someone with FTD

I wanted to share this post below to all those out there that are caregivers, LO (loved one's), and friends. This post was on the support forum I am a member of, & with her permission I am sharing this on our blog. The words struck a chord deep inside for me & I wanted you to feel it as well. It is on caring for a LO with FTD (frontal lobe dementia)
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~In situations like this, the caregiver has to develop the ability to perservere in the face of everything and everyone around them -- often times the only source of reinforcement the caregiver receives is the well of strength inside them that they can draw from, the voice that says "I know this is the right thing to do!" " I know what is going on." "I know my loved one is ill." And the caregiver acts in the face of a reality that reinforces a completely opposite point of view - where their actions are not supported, and in fact the person that they have looked to for support and an alliance in times of need is the person that is undermining their very efforts. The caregiver's spouse, parent or child (the person that is ill) is unable to participate in these efforts to improve the situation at hand, to take care of the illness, or to protect the family (especially your children!)

This requires a superhuman strength and courage that few recognize. To endure the wrath of a loved one that fights every step a caregiver makes out of love. To "accept" the suspicion, anxiety and paranoia a loved one feels for a caregiver who is acting on a loved one's needs for their very best interest. To offer care to a loved one without the expectation, but with the hope of care in return. To feel the betrayal, the disappointment, the hurt, and to get up the next day and keep going.

Taking the keys, arranging doctor visits, finding day care providers, managing day to day.....that well of confidence is so elusive. It will grow over time. It will shrink and return. Hopefully you can hold on to it. I try to!

In the beginning, I tried to decide what kind of person I wanted to be - for myself and for my husband, and then said I would try to make decisions based on that. You are a strong mother, and you are making good decisions for yourself, your family and your husband based on that. It's not easy, and you won't always know what to do, but you can hold fast to that at the end of the day. And that's something.

Michelle
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Caring for someone with FTD is such a heart wrenching struggle. When you cannot discuss the disease with your LO, when you cannot plan for the future care of your LO with their assistance, facing their anger when you make decisions for them, facing their sadness when they do not understand you are doing all that you can do, the list goes on... Having the online support group has been a wonderful place for me. I have met people throughout the world caring for their LO's. Canada, Australia, Italy, New Zealand, UK, & all over the US. We all have one thing in common... caring for our Loved One & how that affects our lives. I have met so many AMAZING & LOVING people whom I pray for every night.

It seems every day someone new joins our support group. It is so sad, to know that other families are just beginning this journey with us. I am Thankful they have found the support... but sad they had to find us.