Wonderful Event in Phoenix for FTD Awareness!

Check out this Musical Event for FTD awareness in Phoenix.

http://mim.org/events/music-and-dementia-hitting-the-right-note-2/

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“Music and Dementia” will highlight the power of music to maximize comfort and enhance quality of life for persons with dementia.The speaker is Dr. Maribeth Gallagher, one of the facilitators at the FTD Support Group based at Banner Alzheimer’s Institute in Phoenix.

The group meets on the second Tuesday of every month from 12.30 – 2pm. It is a comforting, supportive environment with many caregivers, past and present who talk about their experiences through FTD or just listen to your story. You can talk or not, there is no pressure, no “advice”,  just people like you talking about their life.

The group is supported by the Association for Frontotemporal Degeneration (www.theaftd.org) and has lots of resources for you to tap into and have your questions answered.

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Onebrave cowgirl – an excellent column for caregivers

Battling the Caregiver Blues (or How Not to Drown)

This expresses so well those days you feel like you are drowning. Thanks to Carol Fant for expressing her experience so eloquently. She is definitely “One Brave Cowgirl”

Frontotemporal Visitation – yes or no?

Prison barsTo visit or not to visit, that is the question?

You hate to see them that way, but you want to see them.
You feel guilty if you don’t go, saddened if you do.

Keeping a relationship going with your loved one with FTD is difficult at the best of times. Once they are institutionalised, you are faced with a whole new set of decisions.

Just making the decision to ‘place’ them somewhere other than your home is one of the most difficult things you will ever do.

If, like I did, you try to make their new place as ‘homely’ as possible, you may be very upset when they don’t even notice the favorite pictures on the wall. The photographs of your grandchildren. Or a memorable trip you took together.
They won’t notice the cashmere sweater you got them for Christmas.
Hell, they probably won’t even notice if you don’t visit.
That hurts.
It hurts that your efforts to overcome your grief, sadness and anger are often for nothing. It takes a superhuman effort to ‘keep it going”.

Superhuman effort to keep your needs under wraps.

We only try to ‘carry on’ for our own benefit. It’s not selfish, it’s self-protection. We use the practicalities of resolving issues to paper over the cracks of the situation.

It’s out of control. Often you feel out of control. You desperately hold on to everything you hold dear. Your routines and schedules. Your little habits. The things you did together.

The visit comes around and you fit it in to your routine. You have a new routine every week it seems. Your FTD life, albeit changed now that you deal with it outside your house, continues.

If you still work, you focus on that during the times when you’re not FTD’ing. It’s a welcome distraction. Anything so you don’t have to think about what you did. What’s happening in your life.

People marvel at your ability to cope. But it’s all a sham. Another superhuman effort to disguise the fact that inside you are breaking up.

The one person who would help you through such difficult times is the very cause of your anguish. But they can’t help you.

It’s like watching them drowning in sight of the shore, but your feet are in encased in concrete and you cannot run into the ocean to save them. The ocean of FTD is unrelenting. Its tide washes over everything, scooping up your life until it becomes flotsam and jetsam scattered over the sand of time.

Visiting can either be a relief – you are reassured that they are being taken care of physically so that you can share emotions (which they no longer have).Or it can be a trial of frustration and sadness because they no longer acknowledge your caring and love. Sometimes it’s both.

So it’s tempting at times not to go. Just not to go. The physical pain caused by the emotional anguish can just be too much. But then, the guilt comes. Guilt is a powerful soldier of the FTD General. It will follow you around, sit on your shoulder, peck at your head. Guilt is good at steering you back to what you don’t want to do.

But you do want to do it.

But then you don’t.

Yes, you do – oh wait, it hurts.

Visiting is such a dichotomy. You’re damned if you do and you’re damned if you don’t. I can’t tell you not to feel guilty if you don’t want to go. Sometimes you just feel like staying home and being ‘normal’. Relaxing and not doing anything in particular. But there goes that guilt again. “You shouldn’t be doing that! Not when your loved one is suffering so.”

The suffering is yours too. They don’t know they’re suffering. In a place with good care, their needs are being met. They don’t really have ‘wants’ anymore, just needs. And that is one of the things that is so hard to understand.  They don’t ‘want’ anything. They don’t ‘have’ anything. They don’t want their own stuff. They don’t ‘want’ their other life. They don’t ‘want’ you.

They don’t ‘miss’ anything.

And even though you know they are not doing that by choice, it still hurts.

Visits are overrated, I think.driftwood

Book Rec

Although about the journey through Alzheimer’s disease, many of the experiences and thoughts ring true with so many of us…….

Info & Resources for Caregivers from Dr. Chow

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Thanks to Dr. Stan Eaman (Buddhist and ret. BC psychiatrist) for this book recommendation: Olivia James Hoblitzelle wrote lovingly of her time with husband “Hob,” as they got through Alzheimer’s disease together. Ten Thousand Joys, Ten Thousand Sorrows was retitled and reprinted internationally in 2010. I admit I have only read the sample of the e-book thus far, but if you liked The Memory Clinic, you may appreciate the same messages from the viewpoint of this spousal caregiver whose words flow with grace.

A brief excerpt from the book:
I felt a surge of impatience, then realized that the problem wasn’t a need to hurry but my own grief at his growing disability. Impatience was easier to deal with than feeling the depth of my grief.

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Offended? I don’t really care!

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So apparently, I have made a huge faux-pas and not ‘credited’ someone in my retweets and reblogs. Despite the fact that my reblog clearly stated “reblogged from……” And my retweets clearly showed the source. Because it was a RE-tweet, right?

Well, I’m very sorry. Sorry that you’re offended. Not because of what I did.  Because that’s your problem and not mine. If you have nothing else to do all day but constantly be tweeting and writing articles, I’m very happy for you, In my world, life is not about taking the credit for what you do, but understanding how much someone else benefits from what you do. Your inflated ego is of no interest to me whatsoever. I don’t care about Twitter ‘etiquette’ – give me a break!

I am educated and understanding of the fact that true, evidence-based writing is valid and deserving of referencing. but please, a blog on a niche topic about which you profess to know all (but are not legitimately qualified in) and deign to share your ‘advice’ with the rest of the world is not really of academic stature is it?

Anyway, rant over.

My actual topic is around people being offended.

Offended by your loved one behaving strangely or inappropriately.

Offended by your apparent blase attitude when it happens.

Offended simply by the fact that they are embarrassed for you and by your loved one.

Don’t care. Please don’t care. If your FTD’er isn’t hurting anyone or themself, social embarrassment is the problem of the observer, not you or your spouse/friend/parent.

I experienced many occasions when my husband’s behavior was just not okay. But he wasn’t stealing, or being rude or hurting anyone. He was just being himself. The new him that I loved just as much as the old him. Just doing what comes naturally. Usually, our social norms and mores take over and dictate how we behave. In FTD though, the development of these skills not only diminishes, but disappears altogether. Until we are left with a 3-year old version of the man/woman that we have loved for so long.

Imagine taking a 3-year old to the movies, or the supermarket or a friend’s house. You don’t expect them to behave perfectly the whole time you are out do you? No, you make allowances. And so do other people. But when your 3-year old is disguised as a 55-year old man, the allowances tend to disappear. As if somehow,you can control your 3-year old Boomer and stop the bad behavior.

It’s just ignorance. Lack of awareness of what’s going on out there. The typical societal response. “If it’s not happening to me , then it’s not happening”

You’ll notice I said “societal response”, not human response. Humanity is not the same as Society. We (especially women) are conditioned to never offend others, be respectful, be “nice”. But our very ‘humanness” is what enables us to take care of our loved ones – through thick and thin, “In sickness and in health, til’ death us do part”. Not societal edicts.

The ignorance is astounding, yes. But what is worse is that even when there is knowledge and information, ‘people’ still want to look the other way. It makes them uncomfortable, seeing ‘less-than-perfect’ human beings. Any parent of a handicapped child will tell you that. Anyone in a wheelchair will tell you that. Sometimes I am ashamed to be part of this race we call ‘human’.

Our society is obsessed with perfection. But perfection is conjured up by human frailty and inadequacy. As a defense against it. The fear of being, seeing or experiencing anything less strikes the fear of God into the hearts of many people.

I don’t care. I don’t care that they think my husband, grandchild, friend, parent, whoever is offensive.

I think they are offensive. Offensive to the true human race. Not the fake one. Not the Hollywood/TV/music world one.

The real one.

The one where people actually love other people for who they are. No matter what happens to them. No matter how their disease forces them to behave. No matter what affliction they have been handed.

So, if my love offends you? Guess what?

I don’t care! Tongue