FTD Family Matters

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Family.

The word conjures up different things for everyone.

Togetherness, love, anger, jealousy and everything in between.

Your family can make or break you. They are who you fall back on in times of stress. If you have that kind of a family that is. Not everyone does. Your family can be blood relatives or someone you met along the way.

It never ceases to amaze me how much some people – not just family – expect of you. How much they expect from you. I have arrived at a stage in my life where my family are even more important than ever. But I am also at a stage where I will not include people in my life who bring drama, bitterness and any other kind of negativity. Oh no, I’ve had quite enough of that thanks.

We somehow assume that our family will have that unconditional, never-ending love. The kind that even when tested, will never wane.family-fight

The kind that, in a strong relationship, will weather the FTD storm, despite the very many challenges that come along.

That being said, people will often feel guilty that they aren’t doing more. They take out their guilt on you. They may lash out and ‘blame’ you in some way for their own perceived shortcomings. You on the other hand, just get on with everything. Because you have to. Someone has to keep the ship afloat and that person is you.

You don’t have time (or the energy) for the luxury of other people’s drama. You have enough of your own.

Some of you may have family members who talk the talk of being supportive, sympathize and and tell all their friends about how challenging it is to have a family member with FTD. But they never actually do anything.

Well, here’s the thing. Your journey with your loved one through this bastard disease will likely be the hardest thing you ever have to do. Those bystanders have no clue what you are, have been or will be going through.

The bystanders will gratefully accept compassion and sympathy from their friends and other family members, as if they are the ones doing it. Don’t let them steal your thunder. You are losing your loved one. You are living each day on a knife edge. You are giving up the life you thought you would be having and instead, are drowning in a sea of dependence.

Most of these thoughts have occurred to me well after my journey was over. Make no mistake. There are certain members of our family and good friends too, to whom I will be forever grateful. But they know who they are. Everyone knows there are friends who are closer than family. But, for some reason, certain family members think they have ‘rights’ to more attention, more knowledge than others, just by virtue of being family. I would disagree with that.Frustration

Just to reiterate – I am eternally grateful for those genuine acts of kindness shown to me by anyone throughout our journey. FTD is a heinous, ruthless, bastard disease. But to me, one does not act kindly towards someone with thought of reward or compensation of some kind.  I guess I have been a little shocked lately to learn that there is some kind of expectation of repayment.

But that’s just me. Maybe I am ungrateful, unappreciative. I don’t think I am.

Everything I did, I did for love. I did not do it for some kind of reward. Believe me, there is no shiny award at the end of the FTD road.

Except maybe self-respect. A sense of doing the best that one could. Of knowing that you gave your all for someone else and would have traded places with them in a heartbeat if you thought you could save them.

I don’t think you should have to pay any more than that. I don’t think that your behavior should be judged ‘thoughtless’ by those who have not walked in your shoes.

Family.

They can be the bane of your life or your savior. Thankfully, most families have a little of each.

I love all of mine. Even if they drive me crazy. Even if they don’t understand. Or even try to.

I love them anyway.

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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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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

Deborah T:

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

Originally posted on Info & Resources for FTD 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

Feeling the love, hating the guilt

Deborah T:

Excellent points on relinquishing your practical caregiving role from Dementiachallengers  -which offers advice and stories about caregivers of people with dementia (http://dementiachallengers.wordpress.com)

Originally posted on dementiachallengers:

When my mother was diagnosed with dementia, she said to me “when things get really bad, just put me into an old people’s home”. We both laughed (albeit rather bitterly) and life moved on. A few weeks later I revisited the conversation after talking to another carer who’d told me her mother had made her promise that she would be cared for at home until she died – and the carer was finding it impossible to keep that vow. This time, when I talked to mum, I promised we would do everything in our power to keep her at home but that we couldn’t promise she’d never have to move into a care setting. To be honest, that wasn’t well received by mum and I felt dreadful saying it but we really needed to have that conversation – and at the same time we talked about the other difficult topics:…

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High Days and Holidays – FTD and Special Occasions

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Weddings, birthdays, anniversaries.

Family occasions that may be beyond understanding for your FTD partner. Births, deaths, accidents. All out of their scope of comprehension.

Even though they may have celebrated loud and large for many years, the time will come when they no longer recognize those red-letter days. Even their own birthday. Or yours.

Or your anniversary.

Although we had been married for 35 years, my husband continued as though it were just another day for the last 2 years of his life. The first time, he only became aware because our son gave us a card. When he realized, my husband was devastated. After 10 minutes he had moved on to something else.

Our granddaughter died of Sudden Infant Death Syndrome three months and seventeen days after she was born. When he heard the news, my husband was hysterical.

For about an hour. Then he moved on to playing with our grandson on the bedroom floor. They had met when we visited for one week when she was six weeks old. Later that evening, he looked at the photos of all our grandchildren and gestured “Which one?”. He knew something had happened but not to whom.

After that night, he never mentioned her again.

My solo journey through the catastrophe made it doubly tortuous.

I’m not sure that one can adequately prepare for these continuous virtual slaps in the face. Figuratively speaking that is. Those days that were once so precious in your memory become just that.

Memories.

Your day is consumed with Adult Day Care, household chores and the continuous performance of Charades that has become your life.

Depending on the severity of your loved one’s decline, you may have other duties. Keeping him or her clean and dry will take you back to when your children (if you have them) were small.  If incontinence has become an issue, you will be plunged into the world of diapers/spare underwear. Spare pair of pants. Spare tee shirt. Attending any kind of function requires the same military precision as a trip. As well as carrying supplies, you need to:

  • Plan a route to and from the venue. Knowing where you are going will lessen the chance of frustration at getting lost.
  • Check out the entrances and exits, the location of the restrooms.
  • There may be people attending to whom you will need to explain your loved one’s condition. If social filters are severely eroded,  warning people in advance can make less fraught interactions.
  • Other people may be embarrassed by your FTD’ers behavior. You can take one of two routes here.

1) Consider it their problem and not yours or

2) Explain what is happening and then refer to 1).

Try and divert your loved one’s attention away from alcohol. If they have always liked to drink on social occasions, try surreptitiously substituting the non-alcoholic variety. It worked for me.

It is another one of those things that you have to learn to do alone, before you are alone.

Celebrate. Even when you don’t want to.

Continue to share happiness and warm feelings. Treasure them, remember them. Lock them away in the storage room of your mind.

For there will come a time in the future when you can draw on the store and savor those moments.celebration