Holiday from FTD? Not Bloody Likely! Top Ten Tips for Handling the Holidays

pumpkinsThanksgiving, Hanukkah, Christmas, New Year,  Kwanzaa. Whatever your choice of end-of-year festivity, you may have your work cut out to retain your sanity.

It’s that time of year. For those of us who are deeply entrenched in FTD, it’s the beginning of a season fraught with even more stress that usual.

You have managed to get through the last twelve months of attending to your loved one’s every need and whim. He or she may have deteriorated significantly during that time. There will have been new ‘phases’ every week month or even daily.It’s a lot to deal with.

And now, you’re expected to deal with that and all the other things your family want you to do. The usual.

The usual traveling, cooking, shopping. Wrapping, eating drinking.

Of course, your FTD’er probably doesn’t care about any of that. To him or her , it’s just another day.

You so desperately want to do the things you usually do. The family traditions. The foods you eat, the gifts you give, the places you visit.

Of course, things may be so significantly different now that some of these things are impossible. Maybe they can’t or won’t eat their once-favorite meat, side dish or gravy. Maybe all they want is dessert.

Maybe they want cereal. At every meal.

Traveling may now be impossible. Shopping will require  small army of sitters to watch over your loved one while you go out.

Here’s the biggest tip of all:

Don’t do it.

I’m not saying don’t have Christmas or Thanksgiving or Hanukkah.

I’m just saying forget any ideas you may have about making the holiday like it’s always been. The minute you accept that it will be different, it will get so much easier.

  • Traveling at peak times will be almost impossible if your loved one is anywhere near the middle stages of the disease process. Truculent – (there’s a nice old-fashioned word!)  doesn’t even begin to describe how stressful it will be at an airport, bus station or in your vehicle. Don’t do it.
  • Having large, noisy family gatherings at your house isn’t a good idea either. Being unable to follow conversations, or join in the fun will only lead to frustration for all. Don’t do it.
  • Short visits to friends or family may be ok, as long as you go to them and can choose to leave whenever your loved one gets fidgety.
  • If you have a small family group over at your house, be sure to encourage a nap time for your FTD’er and provide a quiet space they can go to escape.
  • When you serve food, just give them what you know they will eat.
  • Your loved one probably won’t get the “Holiday spirit” idea. It’s just another day to them.
  • Try to keep the routine as unchanged as possible. Fit visits to your place of worship into their usual schedule. Carry on with walks or other forms of exercise that they normally do.
  • Buying expensive gifts for your loved one probably won’t be appreciated or recognized. Go for practical.
  • If you want to get in the spirit and go gift shopping or out with friends, arrange a reliable sitter and go for it.
  • You deserve a break. Don’t turn down invitations to go solo.

And, as always – expect the unexpected. A new phase can start any minute. But don’t live in dread of it. Embrace your family and friends with as much joy as you can. Enjoy the time with your spouse/partner/friend. Make the most of every minute.

As I always say, love, love, love.

The holidays are about love, whatever your choice of festivity.

Give thanks that  you are together for one more year.  holiday image 1

Frontotemporal Fun ? Oh no it isn’t!

birthday images Today is my birthday. The second one that my husband has not been alive for, the third when he was not with me. Today is also the second anniversary of the day that he left our home for the last time. He went into a facility that would care for his new needs better than I could. A place where they would try new medications and deal with his physical needs. His frustration and combativeness. His lack of insight into the truth. The bastard disease had finally pushed him to new limits of mental anguish. Unable to fully understand what was happening, but alert enough to know that something was. Something that had previously been insidious but now was running rampant through his brain. It scrambled his thoughts and erased his prior life like some brainwashing machine.  Repeated confrontation and insult to an already dilapidated organ.

  • Pleasure takes on a different form in FTD. It becomes more basic. Those things previously enjoyed are erased.
  • Food often becomes a source of obsession. Sometimes the person will only eat one or two specific items for a while. Sweet things are always welcome however!
  • In earlier stages, things like jigsaw puzzles or games meant for pre-teens can capture their attention for a while.
  • People with FTD often enjoy physical activities like dancing, kicking a ball around or walking.
  • Lack of emotional insight can inhibit the ability to experience pleasure.
  • Aphasia or just the inability to express thoughts can lead one to thinking they don’t like anything.
  • Just keep trying different things to eat, drink, do.
  • There’s nothing to say YOU can’t still try to have fun.

Anyway, my blog topic  today was meant to be about fun. Nothing funny about FTD of course. There are moments of humor, but not really fun per se. As the responsible party of the group, you always have to be on the lookout for inappropriate behavior and frustration. It’s never-ending. You never get a break, even when you’re doing something fun, like a vacation or Christmas. Because your FTD’er is never on a break.

The bastard disease doesn’t take a break.

Hotel Del

So here I am at this beautiful hotel in California. Celebrating my birthday with some of my favorite people in the whole world. There are more favorites missing, but we’re still here to have fun. Fun means something completely different nowadays.

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Put Your Dukes Up! Put ‘Em Up, Put ‘Em Up! Five Strategies for Fighting the Good Fight When FTD is Your Opponent

Put Em Up 21. People. As in any fight, it takes a team. It’s hard work. Not only being a caregiver, but getting used to all the new things that your loved one will be doing, saying and acting out. You need a team of great people who love you and them for what you are. Warts and all. Not some fair-weather friend who flakes on you at the last minute. You and your FTD’er need a reliable group of people who will absorb you and do whatever it takes to make life run as smoothly as possible. Friends, sitters, doctors, nurses, social workers, attorneys, family, support groups. The more people you can get in your corner the better. Because there will be many, many rough days.

2. Patience. Even if you don’t have to deal with anger, aggression, violence or verbal abuse, you may (probably) have wandering, getting lost, incontinence, pure stubbornness, inappropriate social behaviors and garbled speech or total silence to deal with. Or a combination of any or all of the above.  You may not usually be the most patient person in the world. (I’m definitely not). It may take an act of supreme strength to hone the skill until  you can be entirely selfless and do what needs to be done. And then you can’t feel like a martyr.

3. Flexibility. To handle everything that is happening to you both. Go with the flow. Accept the inevitable. We’ve talked about this before. Pick your battles. Don’t waste your energy fighting “IT”. You can’t fight FTD per se. No matter how much you believe in mind over matter. It doesn’t matter to FTD what you have in mind. Being flexible will help you deal with everyday changes. Your routine may only last a few days before you have to change it again. Or it may last months. Who knows. You just have to be able to change your plans without notice.

4. Humor.  A highly developed sense of one too. You will see the honor in the most horrible situations. Macabre almost. Sick even. Sometimes things are so ridiculously outrageous you just have to laugh. At yourself. At the things FTD makes your loved one do. At the reactions you get from people who are so wrapped up in their own “Glee-like” dramas. Humor in unpleasant things. Humor in things you’ve never even considered before.  Ignoring that your house needs cleaning when it looks like a tornado went through. Even your kids didn’t make this much mess. And being ok with that. Or conversely, having to tell your loved one “I live here too you know!” when they are obsessively cleaning and tidying behind you everywhere. Humor in going to buy a bicycle pump even when you know he isn’t going to ride the bike anymore. But doing it anyway.

5. Love. Always love. Love the harsh words and sounds. Love the seemingly unloving behavior. Love what is left of them. Love yourself. Love the treasured memories.

Love every minute until there are no minutes left. Ding! Ding! Go to your corner please.

Never let your guard down. Ok I suppose that’s six strategies. But I mean it. Just because you have known and loved someone for forty years, does not mean they will not turn on you. It’s not ‘them’ anymore remember?

Put up your dukes and fight the good fight. Not physically. Metaphorically. Heroically. Fight for them. Fight for you. Give it your best shot. It will make you feel better. And get your team onboard too.

FTD is a fearsome contender. Advocacy is a fantastic defense.

But don’t make yourself your own worst enemy. Go with the flow. Relax.

Love! Love! Love! It will be over sooner than you would like.

Boxing gloves

That’s the old one-two. The sucker punch.

You want it to be over. Ding! Ding!

But wait, you don’t want it to be over.

Over is painful in a different way.

Caught in possession of FTD – Objets d’alan

Wish in a bottle Stuff, possessions, belongings, things – shiny objects.

Clothes, jewelry, books, papers. Treasured pictures of a lifelong hero.

Stupid stuff like a tatty old messenger bag.

A Target tee shirt – no value but one of the last things he wore.

No intrinsic value.

What has value now?

Family – children, grandchildren, brothers and sisters.

Friends – old and new.

But the Target tee-shirt – why can’t I throw it away? I bought it long after his diagnosis, there are no really good associated memories. It’s washed-out, shabby and smells of the last Care Center he was in. Doesn’t even smell of him. It was in a drawer, washed and folded.  Clean. It ended up in the box of belongings I brought home.

One thing I have never been able to find since he moved out to residential care has been his wedding ring. He wore it on a chain around his neck for years. But in the middle stages of his illness, while still at home, he would roll it off over his head if it was irritating him.

He would hand it to me with a grunt as if to say“Here, take care of this”. So I did, I treasured it. If he handed it to me while we are out, I would put it into my handbag. Then when we got home, I would transfer it to the jewelry box for safe keeping until he asked for it back.

Once I got home from work to find all my handbags (and I have many) strewn across the room. I asked what happened and he could not tell me.

I eventually got that he was looking for something (after a long game of Charades) and by a sequence of elimination, I realized what it was. The ring.

I took it out of the jewelry box and handed it to him.

That was the last time I ever saw it.

In the day-to-day melee that followed, I never noticed that eventually he was not wearing it any more. It was only when I sorted his things out after I had moved him into a facility that I realized I hadn’t seen it for ages. I felt so bad about it. Still do.

Wish I could find it. I keep hoping it will turn up someday.

I have no idea how that will happen since I have moved house and downsized pretty much everything since then.

wishng ring 2

  ……just wish I could find it.

FTD – the Number One Spirit Stealer.

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It has been over a year since my husband died as a result of Frontotemporal Degeneration. The last two years of his life were stressful for all of us and that’s putting it mildly.

I have been a little perturbed lately by the many FTD blogs I follow and a Yahoo FTD Support group I am involved in. In the midst of my own desolation over the last two years, it seems that many other people have now started on that same journey. They tell their tales here and on the pages of books now available on Amazon and iTunes. In libraries and bookstores. Some of the stories are almost unbelievable. But I believe them because I too have experienced many of the episodes they describe.

“Odd” behavior doesn’t even begin to describe it.

Challenges in social situations. Even with the most mundane of household tasks and necessities.

It’s not that I have forgotten what I did, just that I cannot believe that I actually did it. Handled things I mean.

I’ve always been pretty strong and been able to cope with just about anything. But, going through the day-to-day challenges of FTD  – well frankly, I’m still a little gobsmascked. The saddest thing of all was that the one person who would have helped me cope with such ordeals on a daily basis was the one person who could not help me. We went through so much together before FTD- but no more than anyone else really. You know, the usual ups and downs of everyday married life with kids.

But we were always there for one another – someone always had your back. The toughest part for me since he died is not actually being anyone’s “Number One” anymore. My kids have their spouses and kids, my in-laws have each other. Seems like everyone has someone who puts them first. so that is the hardest thing for me right now.

Number One 4I’m my own Number One!

Being a nurse, mother and wife,  I am used to prioritizing and putting the needs of others before mine. It’s quite a new sensation when you don’t have to do that anymore. Strange.

Anyway, watching all these other people go through such similar experiences moves me in different ways. Angry obviously, that the bastard disease takes such a toll in such a cruel, insidious way. Touched by the humility and acceptance of many of the caregivers. Frustrated that I cannot help very much. I can offer to relate my experience but would never dream of giving ‘advice’. Every person is unique. Every person with FTD is unique. The bastard disease attacks the very soul of its victims, it seems.

 Darth Vader

  The destroyer of dignity, spirit and freedom reigns supreme.

Hang in there folks. You can’t stop it taking your loved one but you can stop it taking you.

I have no magic pill for either you or your loved one. You will come out the other side of the tornado changed. Broken but still strong. Sadder but wiser.

Hanging on a rope  As Franklin D.Roosevelt said:

“When you get to the end of your rope, tie a knot in it and hang on”.

Six Tips for Surviving the Holiday Season When a Loved One Has Dementia

Some good advice…..I will add my own thoughts over the coming weeks

Dementia Journey by Deborah Shouse

t-dayNormally, Thanksgiving was my favorite holiday, a time our family gathered together at my Kansas City home. But that November, my stomach clenched at the thought of our traditional Thursday evening meal.

My mother had Alzheimer’s and the holiday would be different.  I felt alone but of course I wasn’t: there were 15 million family/friend caregivers helping the five million Americans who have dementia.

I’d been through my initial storm of denial and grief. I felt I’d been coping well with Mom’s diagnosis, focusing on offering my father extra support and trying to flow with Mom’s now spotty memory and personality quirks. But a pre-season sadness invaded me in October and I found myself dreading the alleged festivities. How could we have our usual holiday dinner, take our after dinner walks, play Scrabble and Hearts and Charades without Mom’s participation?  How could we enjoy going to movies and plays when…

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Listen! They’re playing our song! 10 Loving Thoughts in the Midst of the FTD Maelstrom

tornado 1

1. Music. That one (or more) song that makes you smile every time because it reminds you of a happy time. One of mine is Crowded House’s “You’d Better be Home Soon”. It reminds me of lazy Sunday afternoons sunning ourselves out by our pool. Swimming and just generally hanging out. Sometimes with friends sometimes just us two.  Everyone has an “our song” too. Or maybe several as you traverse the years together. One from the 70’s, 80’s, 90’s etc. songs you remember as markers in the passage of time.

2.  Watching. That TV show or movie that you both loved or hated. During the middle stages my husband could only follow shows that he had watched many times. “Two and a Half Men” and “M.AS.H.” were favorites. Short, funny, familiar.  Before that though we shared laughs and tears watching shows on PBS that reminded us of our U.K heritage. Along with “Shawshank Redemption”, “Calendar Girls” and “Love Actually”.  I can’t watch any of them right now.

3.  Football. (Insert the sport or pastime of your choice in here). On Saturdays or Sundays nowadays, my sons and I watch our team, Manchester United. This habit developed over the years. First when our sons lived at home. We would get up at 430am to faithfully follow our team and watch the live games. Enjoyed our “Full English” (breakfast) with friends and family. It was quite the occasion almost every weekend. Happy times.

Of course as the bastard disease took over, my husband lost focus and could no longer sit for 90 minutes or even follow the game. He would echo comments on the game that were made by everyone else. Eventually he would get up and wander around the house. Unable to concentrate on his beloved Man. U.

4. Walking. We both loved to walk. Around our neighborhood. Up the mountain trails across the street. We walked for exercise. We walked for fun and enjoyed the time together away from the hurly-burly of the work week. We walked early in the morning. After dinner. At the weekend.

Walking was something we shared right up until he moved into institutional care. He would walk ahead of me then.  Turning to check now and again that I was still there. He loved being outside. The freedom of being unconfined. No talking was necessary. He could just march forward like the old days. No pressure.

5.  Dancing. Apart from the “our” songs, which are meaningful for different reasons, any opportunity to dance around the kitchen island made us laugh. If a familiar song from our teenage years came on the radio we would dance in the style we did then. Hilarious. Even when ironic humor was no longer understood, he could understand fun. For quite a while anyway.

6.  Friends.  It’s amazing how people unexpectedly surface or disappear during a protracted terminal illness. People step up. People step down. It’s quite surprising who those people are. Disappointing too. But people will do things you never expect at all. Sit at your house, cook for you, drive your loved one to an appointment.

Others make promises of things they think you want to hear. Things that you would expect of friends. Maybe their version and understanding of friendship is different than you thought.  Still you love them anyway because you sort of understand why they stay away.  Understand their excuses.

They can’t stand to see their friend in such a state. They can’t overcome their own pain to help you with yours. Or that of your loved one. Maybe they think your loved one won’t know that they have drawn away. But I think they do. Especially in the earlier stages. It is quite upsetting for them to know that their best buddy can no longer bear to talk to them. You can forgive maybe. But not forget the hurt.

7.   Photographs. Looking back at images from earlier in your relationship can evoke fond memories and loving thoughts. This may seem like a no-brainer. But when you’re deep in the midst of handling the bastard disease it can be good for the soul to remind your self of how it was. Instead of looking at how it is now.

8.    Food.  Favorites change once you get into the throes of FTD.  Clinically, it may be that the sense of taste diminishes. What it means for you is that old favorites turn into something no longer tolerated. A propensity for all things sweet prevails. But that’s ok because sharing a Starbucks Frappucino can become the highlight of a visit or your entire day. Just serving something that gives pleasure can be one of the few things that you feel you’re doing right. If it’s not nutritious so what?

At one of his residential Care Centers, my husband would pocket the chocolate chip cookies they gave him at snack time. Then when I came to visit, he would get them out of his pocket and share them with me. They were a little worse for wear – crumbled and melted, but he got great pleasure out of the simple act of sharing.

New favorites can become a source of satisfaction for both parties.  For you, feeling a sense of accomplishment at being successful in getting them to eat something. For them, the simple pleasure of taste sensation.

Feeding them love. Good for everyone.

9.     Sleep. Sex aside, just the simple act of lying next to a loving warm body evokes a feeling of comfort and security.  Sharing a sleeping space brings these things to both people.  Sleeping together is often the only ‘alone time’ you get together if you both work and/or have kids. You come to relish those late night/early morning whispered conversations. Don’t want to wake the kids/in-laws/guests!

We managed to sort out many of life’s problems in those stolen moments together.

There comes a point of course, when this may be no longer possible. I did move into a guest room eventually.  Mainly because the restlessness of one of you all night doesn’t go well with the other one getting up for work at 4.30 or 5am.  Sleeping itself is often a major factor in FTD.  Either not enough or a lot.

In the middle stages, while he was still able to stay home alone during the day, my husband would nap frequently. Then when I got home from work, he would sleep all evening after dinner. Then go to bed, potter around in the bedroom for an hour or so and sleep for eight hours.  Restlessly – up and down during the night, but still sleeping most of the time.

10. Trips. Traveling together was something we always enjoyed. Back to England. A short hop to Los Angeles or Las Vegas. A cruise. A beach here. A city there. London. Paris. New York. Greece. Spain. Started by my husbands naval history. But furthered by our mutual love of enjoying different places and people. We loved to ‘people-watch’.

The last “big trip” we took together was in 2010. Two years before the bastard disease put a stop to our travels. It was a stressful, anxiety-ridden time but worth the frustration. The last opportunity for a semblance of quality time together.

We traveled to the Caribbean to see an old friend. Relatively happy times. I’m glad we did it.

I have loving thoughts of all these things. It doesn’t really help with the pain sometimes. But remembering is comforting. At first it is hard to remember back to when FTD was not the intruder. Even though there were many years and happy memories before it came along.

All I can tell you is that there can be loving moments and smiles even on the darkest of days during and after FTD has taken what it wants from you.

The bastard disease can’t have it all.

So there 1

 

 

So there!

Walters Times Three – a Match for FTD! Seven Pointers for Getting Your Way by Bending the Truth

Spiders web 3

“Oh what a tangled web we weave, when first we practice to deceive!”

  – Sir Walter Scott

Ah, the art of deception! Sir Walter had no idea how often this quote would  be used, misused and mis-attributed (to William Shakespeare apparently)

In your ever-increasingly complex world of FTD, the web of “therapeutic fibbing” grows daily. Untruths lead to more untruths. And so your world, like that of Walter Mitty, becomes something else. Two Walters, three if you count Walter White of “Breaking Bad” fame. Liar, liar pants on fire!

It’s not that you would ever want to deceive your loved one per se, more a matter of survival. FTD brings out new characteristics in all of us –  the afflicted and the people around them. It’s a matter of being in the moment and doing what’s right just now.

  • Just say “OK”. To whatever it is. You can always renege later – they won’t remember.
  • Leave the room (on a pretext if you have to) then come back in and present or ask whatever it was you wanted them to do again. They’ll probably acquiesce.
  • Don’t argue – they have no sense of reason or logic, remember?
  • You can even tell them that whatever you’re giving or telling them is actually what they want. For example, strawberry instead of raspberry flavor (same color). Non-alcoholic beer/wine. Having four of the same tee-shirt they love.
  • Don’t tell them in advance of a field trip. “Are we there, are we there yet?”  “Is it today?” “Is it today now?” Just give them a little warning, Or none.  Just go. Sometimes that works even better if you have a semi-compliant  person who will go wherever as long as it’s with you. I got my husband to an in-patient psychiatric unit by telling him it was where a Dental Specialist was. (He had just had dental surgery and was in a lot of pain and was very angry). Remember that just because they will do it today doesn’t mean they will tomorrow.
  • Sometimes you can lie by omission. Just don’t tell them what you’re doing or why. Don’t volunteer any information that isn’t necessary for them to know.
  • Ask yourself “How will it be better if I tell him/her exactly whats going on?”

Come on, which one of you ladies has not hidden a purchase in the closet and then got it out a couple of weeks later, saying “Oh this? No, this isn’t new, I’ve had it for a while!”

See, you’ve done it before.

It takes a little practice, but it works.

And before you’re done, you will be capable of Oscar-worthy performances.

Now I know that doing these things to your spouse/father/mother/sister/friend seems terrible. But remember, your spouse isn’t the one standing in front of you anymore. Well, it’s his or her body, but the person you respected and loved has, to all intents and purposes, gone.

You now have to learn to be just you. They’re not your support, partner, friend anymore. It’s a harsh lesson but you have to stop pretending that they even care about anything significant anymore.

Self-preservation. Retention of your sanity. FTD is a long haul. There is no way you will survive telling the truth all the time. You may need to make your peace with your higher power, but believe me, it will be worth it.

It’s not wrong. You’re not a bad person.

Loving someone means making sacrifices. You will have made and will make many more before the FTD is done.

The bastard disease will make you do things you never thought possible. Things you previously thought wrong or bad. Maybe they were before.

But not anymore.

Now the whole playing field is different.

All bets are off. It’s you against the bastard disease and it will do its damndest to make your life hell.

Save your sanity. Be a Walter.