The Champions! He shoots, he scores! Team FTD wins again.

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Passions and hobbies are often things that disappear fast in frontotemporal degeneration. People with FTD show an alarming lack of enjoyment or focus on things that were previously their passion. Even lifelong passions and pursuits. In my husband’s case, his deep love of ‘the Beautiful Game’ became less and less important as time went by. It was as if he had completely forgotten how much he loved it. Despite the fact that he had been a huge fan practically since he could kick a ball. Not only a fan, but a coach and mentor. Even made his living from it for a while.

Football, or soccer as it is known in the US, is a British Institution. Originally the pursuit of the working classes at the end of a hard work week, football has developed into big business. As in most sports nowadays, players are bought and sold for millions of pounds, dollars, euros, whatever. But increasingly, the working class are often excluded from games due to the price of entry even for the least expensive seats. 

When football was first played in England in the early nineteenth century, the spectators stood on terraces. No-one sat down to watch. Part of the thrill was to stand in a large crowd of your ‘tribe’, cheering your team on and verbally abusing the opposing team or the referee. The tribal loyalty has started fights, ended marriages and caused lifetime family feuds. Such loyalty to your team is a cultural phenomenon to soccer. The leaning to one team or another is historically driven by community and local ties. Teams don’t move cities or change their name. They are rooted in communities where their fans live and work. Once a United/City/F.C./whatever fan, always a fan. You don’t change teams whatever happens, win or lose. This can make for some very ecstatic or deeply depressing days! I offer this explanation to illustrate the seriousness of the passion. 

Up until the middle stages of his FTD, my husband’s loyalty to his team, Manchester United, remained steadfast.  After that, the focus required to even watch a game on TV was lost. He would get up many times during the game and wander off around the house “pottering” then come back and sit down. He would look surprised as if he had just realized we were watching the game. He would only make a comment on some bad or good element of play by echoing our son’s comments. It was as if he was incapable of independent opinion any more. He could not follow the run of the game. This was very distressing for us as football had always been a common love between everyone in our family. We were used to him yelling and shouting and joining in the excitement.

The passion extended into his working life. He coached football in England and in the U.S. He was thrilled he could be paid for doing the thing that he loved the most. His passion and love of the game was evident in every aspect of his life. It got him into trouble more than once.

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However, once he no longer understood the realities of everyday life, his memory of even the most deeply rooted loves and passions slowly disappeared. This was incredible to those of us in his family who knew how much it meant to him. It was almost unthinkable that he could forget that. He was even oblivious to the familiar pictures of his hero, George Best, that we placed in his room at the first Care Home he went to. We were astonished that he paid no attention to the things he loved. Including us. That is one of the most hurtful things about FTD or  any other kind of dementia. It was as if he knew we were people that cared about him and were kind, but he was not sure who. Actually not even sure how to ‘be’ around us. At any age, I am sure this kind of non-recognition is hurtful, but in your 56-year old husband and father, it is particularly distressing.

We would pore over albums of family photos. We would bring the grandchildren to play in the garden. We would flip over the pages of a book about Manchester United that he had always loved. We would talk about familiar things & people. The strongest reaction we got was a sort of benign smile and nod. There seemed to be a spark of recognition for a while, but this disappeared too after a couple of months. With no insight into the deterioration, this flat affect seemed cruel, passionless. Like he didn’t care. About anything. He had been a vociferous and passionate man. With extremes of emotion – love, hate, anger, pleasure and joy. Such cruel and blatant stealing of the soul is a hallmark of FTD.

Passion was a thing of the past. Passion was dulled by the thief. Passion was killed by the blindfold of FTD.

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Love however is made of stronger stuff…….it cannot be killed by the bastard disease.

Fronto-Temporal Time Travel – Into Another FTD Dimension.

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Travelling with someone who has fronto-temporal degeneration is…..well let’s just say it’s interesting.

The FTD “Time-Bandit” robs your loved one of any perception of time, social propriety and filters. Frontotemporal Degeneration steals many things. The ability to control one’s own environment for one. The abilities of patient and tolerance too. Any consideration for anyone else is lost to the thief.

Once again, the issue of lack of insight comes up.  Your loved one will almost certainly not realize that much is different with him/her. So, when you embark on some kind of trip to anywhere other than to visit understanding relatives, you will need to be well-prepared. Although you will try to plan with meticulous, military precision, your loved one will almost certainly not cooperate at the very moment when you need them to.

You may, as I did, plan ‘one last big trip’ once you start to realize that there is now no going back. Things will never be better than they are today. Whenever you make that decision, you will almost certainly wish you had done it sooner. There is no “Time Tunnel”.

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Travelling with your 54-year old boy or girl with FTD will bring experiences like you have never had before. If you have children, think about the preparation and planning that goes in to taking them on a trip. If your children are grown, it will bring back memories of getting ready for a family vacation. That is where the similarity ends.

  • Packing clothes, toiletries and other necessities takes a while. Because they think they can still do it, your FTD’er will remove what you have packed as soon as your back is turned. They will place things in the suitcase that don’t need to go  (winter clothing or kitchen utensils for example).
  • At the airport, prompting is key. Your loved one will be completely out of their element. And that’s just the start.
  • Now you have to get them through check-in. Watch for them picking up someone else’s bag. They have no clue which one is theirs.
  • To everyone else, your companion looks perfectly normal. So they will ask them questions – “Did you pack your bag yourself?” “What is the purpose of your trip?”. Your partner, if they have aphasia (no speech) may just stand there staring at the questioner, raising suspicion. They make think they are drunk or on drugs. Frontotemporal degeneration is a little-known condition to most people.
  • There are business-type cards that you can obtain or make. Mine said:  “My companion has a disease that affects his memory and speech. Thank you for your patience”. This proves invaluable as you don’t actually have to say anything your partner can hear, but everyone knows what’s going on.
  • Your loved one may ask you “Where are we going?”over and over and over again.
  • They will expect to hold their own passport and boarding pass. That old independence thing again. I found that giving him an old, expired passport and a duplicate boarding pass worked well. It’s just the having of them that’s important. They don’t care that people need to see them. Just need to feel a little control. The FTD robber will take care of that.
  • They will require direction and prompting to remove shoes, jackets, belts etc at Security. And then again to put them back on. Try to have slip-on shoes and no belt or jacket if possible.
  • You may discover things in their pockets that you did not know they had.
  • The TSA people are generally very understanding and patient. The Scattergraph (X-Ray machine) can be a challenge as you need to follow directions to get it right – “Face this way, raise your arms over your head”. Your partner may not be able to do that. The TSA people are happy to use the wand if your partner doesn’t get it. or a patdown, which is a little more difficult to explain to him/her.
  • The next challenge may be the bathroom. You can’t go in the Mens’ Room, he can’t go in the Women’s. He can’t go in the Family one because there are other people’s kids in there. You can’t go in the Women’s and take the chance that he might get out first and wander off & get lost. So you have to wait outside the Men’s room for him. Then you have to wait until you’re on the plane and he is safely in his seat and can’t go anywhere before you get to go yourself.
  • If you have been encouraging independence as much as possible up to this point, this may now come back to bite you in the behind. He or she may now decide to go for a walk and check out the stores/bars/restaurants within the terminal. Persuading them otherwise may be impossible. So, you will have to drag your carry-on and follow them around. Or you could do what I did and watch from a distance, keeping them in sight. While you’re apologizing to the other people whose feet have been trampled or run over.
  • There may be a tantrum and storming off when it is suggested they shouldn’t do certain things.
  • The difference between a seven-year old and your spouse with FTD is that a seven year old can learn something when you correct them. Your spouse will get all indignant and complain you are controlling their world (which you are). But they will continue the risky behaviors or to upset people who don’t understand (too bad, I say!). Because they will not understand why they can’t. They have few inhibitions or social filters now. They will just do whatever they like.

Once you arrive at your destination, the confusion continues. It’s a strange place. They have no idea where they are or how to get to anywhere else. That feeling of losing control is now 100 times worse. If they are obsessive or compulsive or both, they will try to control their environment as much as possible. OCD is FTD’s little brother. At home, my husband would remove his clothes from the closet and drawers and place them in little piles on the bed. Then later, he would return them. When on vacation, he did exactly the same thing. Every day. Sometimes twice a day. It was a comfort mechanism. A familiar routine that he could hold on to.

In our case, we visited an old friend who just happens to live in the Caribbean. It was two planes, a taxi and a ferryboat ride to get to his island, but we made it. I am so happy that my husband was able to connect with his old friend. Even though it was stressful for him, he enjoyed the time we spent there. He had no concept of how far away it was, or how long we were there. Or even why actually. In rare moments, his FTD capitulated to me and was he cooperative and loving for a while.

Some people might think it’s not worth it. Travelling with FTD or any kind of cognitive change or dementia is stressful, tiring, scary and emotional. For all parties concerned. It was worth it to me to see my husband’s face as he spent time sailing with his old friend. It was worth it to see him ‘being normal’, hanging out on a boat, enjoying life. It was worth it to me to make those memories which I now hold alone. I will treasure those forever.

It was so, so worth it.

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FTD the magician, now you see them now you don’t. MIA but still here – handling the Black Hole.

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Perseus Black Hole

Photograph courtesy NASA/CXC/IoA/A. Fabian et al.

It has been a year now. A year of missing. Missing my husband, missing my life, missing what could have been. Should have been.

There is a hole in the fabric of my life. A hole where there used to be so much love. Love is still there of course, around the hole. Love from the rest of the people who fill your life.

But the hole seems bottomless. A deep dark hole. A Perseus galaxy – grade hole.

Not to be depressing but even after a year I’m not certain it can be repaired. I’m not depressed, just realistic. I’m actually quite happy considering. Not happy that he’s not here anymore, but okay with my life. Comfortable in my pain. I  can control it now. Can visit it whenever I like without it being overwhelming.

The hole starts to develop of course even before the end of life. My husband was MIA for quite some time before he actually left this mortal coil. The hole starts as a little fraying around the edges. Day by day a few more threads fall off. The speech, the emotion, the insight. Never the love though. At least not in our situation. The love continued until the very end. Even when the hole was huge, the love was still there.

The beginning of the disappearance was insidious and slow. A word here, a word there. An odd look or gesture. And so it began.

How you handle the decline relies largely on your relationship in the first place. If you learn about what is to come, it is still not pleasant, but at least you know what you’re dealing with. Don’t hide from it. It will find you. The bastard disease, as I came to call it, cares nothing for your love. Cares nothing for the hours, months and years you have spent loving, arguing, kissing, irritating, laughing. Cares nothing for history. Or for present or future. Just steals everything away. And puts it down the hole.

So many people tell you things. They tell you to “take care of yourself”. They mean it too. You want to, but the bastard disease gets in the way. Taking care of yourself requires effort and energy. These two things are in very short supply when you are taking care of and watching out for someone else’s interests.

Handling the Black Hole is tricky. So much depends on so many things. Finances, work commitments, family, your own weariness.

  • Once you succumb to the bastard disease and accept its power, you are able to move forward through hard times.Not easy, but doable.
  • You have to accept its omnipotence and inevitability. Your human spirit will still twinkle with the tiniest spark of something. Maybe hope, maybe denial. Just like a hole in the fabric of space.
  • Be realistic. Don’t expect too much of yourself. Heroism has no place in caregiving.
  • Don’t make yourself visit a facility just out of duty. Take a day off for goodness sake. Especially if your loved one doesn’t know you’re there.
  • Let go of guilt. That one’s easier said than done I have to admit.
  • The missing begins long before they are gone. It starts when they no longer call you by your name. I was “Wife” for quite a while. It happens on occasions that you used to enjoy together – holidays, sporting events, family gatherings.
  • You will miss even those irritating little things that you couldn’t stand but put up with because of love. You will miss just calling during the day to talk about how yours is going. Watching banal garbage on TV because you’re both too tired to care what you’re watching. Missing stupid stuff that doesn’t seem stupid at the time – just normal.

So, a year on, the feelings of  missing are still there. The bastard disease is gone, but so is my husband. The hole isn’t any bigger, but it isn’t any smaller either.

Last weekend, we had a small family gathering in celebration of our son’s 30th birthday which happens to coincide with the anniversary. I hate that he has to celebrate his life’s milestones on the anniversary of his Dad’s death. Our small family group did fun stuff and hung out together like families do. We played games, went out, enjoyed each other’s company. The hardest part was trying not to think about those last few days one year ago.

We were all aware of the hole. But we included our missing member by remembering and talking about him. Not in a morbid way, but lovingly. We have to think back a few years and remember the times when we were not missing anyone. Make fun of things he did before the bastard disease took over. It wasn’t easy, but these things never are.

We love you, we miss you, we will never forget you.

FTD – Families That Deliver – (nothing to do with flowers……)

Godfather 2

“Those were the great old days you know? And we was like the Roman Empire.The Corleone family was like the Roman Empire.” – Frank Pentangeli, The Godfather part 2

If you are very lucky, as are we, your family is a loving, caring group. We are not Italian, or criminal or violently crazed pychos (well I am if you get on the wrong side of me). We are individuals tied either by blood or marriage. We are tied by strong emotions rooted in our history together, by our children and their children. We are not a large family so we tend to be quite close and know each other’s business. We are connected – not in the Cosa Nostra way, but we do have ‘Omertà’. An unwritten code that ties us together.

This weekend we are gathered for a celebration and a remembrance. Celebrating a landmark birthday for one of us, fond memories of different times for another. The occasion has made me think about what a special group we are. Some of us are far away and not able to be close to us geographically as we would like. They are still part of our group. Here in spirit.

Your family may be a group of people who are genetically or legally related or a “family” – those closest to you who can be closer than your actual relatives.

Our family dynamics are, like most other people’s, up and down. It is not a fantasy family where everyone gets along all the time of course. Sometimes one or other of us irritates the other. But like any animal pack, herd or group, we tend to close ranks and take care of our own when something goes awry. Our tribe is fiercely protective of any of the others within it.

When we were first told that my husband had a terminal illness, some of us were disbelieving because he seemed so ‘normal’. Some even questioned if he was ‘putting it on” for attention. This hurt me – a lot. But I had to remember that  most of our group don’t have my nurse training or my understanding of the terrible disease. Thankfully he was never aware of it. As time went by and my husband became more obviously affected by his illness, we all closed ranks and protected him from every perceived threat.

Because that’s what families, tribes, packs do.

“The Godfather” was a favorite story. The appeal was in the power and strength of a family. Our family is important to all of us. Its strength lies in our ability to ‘cover’ for the weaker members. In the various stages of FTD, we would:

  • Fill in the gaps of speech and expression
  • Order food that we knew he would like
  • Make decisions when he couldn’t. But always, always, deferring respectfully to what we knew he would choose if he could.
  • In the later stages, those decisions were not pleasant for us to make, but we made them anyway because that was what he wanted. We had to sit by and respect what he had decided three years before.
  • If things didn’t go his way, he would rail and rant and be very unpleasant.  We would overlook this and:
  • Use tactics to allay or even distract from difficult situations. Food, drink, noise, environment. All can help to change the situation so that  ‘outsiders’ are not too upset.

Keeping dignity intact becomes a primary concern. No-one wants their loved one to be the subject of ridicule or derision.

Our family took it all in their stride. We understood that he was fighting desperately with his inner hitman. The hidden assailant that those of us on the outside could not see, feel or understand. But we helped him fight by keeping our family unit tight and loving him unconditionally. I know from fellow caregivers who do not have family support that it is a very lonely existence. Friends are valuable, but not quite the same as family. You may notice some friends disappear. Having a loving supportive family around me was riches indeed. I don’t think I would have made it without them. The FTD movie seems to stretch forever in front of you. But take heed, the last reel of the film will be here before  you know it. Your family or “family” will help you to the last frame.

At a Crossroads in Your Life? Try the Frontotemporal Degeneration Traffic Lights! The top 3 things you can do to stop your FTD mate from driving.

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What the heck does FTD have to do with traffic lights? It’s a journey and one that is full of junctions and changes in direction. I am fearful when I write of sounding corny or trite in this blog.  Speaking of ‘journeys’ and ‘paths’ seems so not like me somehow. Seems more like those other people who have challenging situations in their lives. Oh wait, that was us. We had a challenging situation.

“Navigating through the challenges”. Now there’s a sentence you hear a lot these days. Somehow when you’re in the thick of that traffic jam of dementia, you aren’t even aware that you are. You just get on with it. There isn’t time to linger at the light.  It’s like when you realize you’ve arrived somewhere and you don’t remember passing all those familiar sights on the way. But you did.

Driving is something that always comes up with anyone suffering from any kind of cognitive change. Driving is power. Driving is control. Even in an altered mental state, people still try to exert control over their surroundings. Losing this power means losing independence. The thing that everyone fears the most.

Green light

 

The green light is a ‘Go’. The green light is life before FTD. Life before only one of you can semi-control what’s going on. Green is good. Green is life as you imagined it would be in your fifties. Green is your 35-year marriage. Finally being able to go where you want, when you want.

The green light means that your spouse drives to work, the store, the restaurant. On vacation to another state, to a sports event, to his golf game – just about everywhere. The green light means you get to drive when you want to too. The green light is independence for you both.

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The yellow light is very different. The yellow light is a warning. The yellow light tells you to slow down because you’re going to have to stop soon. To your loved one with dementia, the yellow light is also a signal of change. Their loss of independence.  Telling them they can’t drive anymore is like lighting a fuse. You can make the doctor the ‘bad guy’. Make them tell him/her they can’t drive anymore. Tell them what a liability they’ve become because their judgment is affected. That goes down well (!). They have no insight into their condition or behavior. They think you are just trying to rule the world. Especially theirs.

As a side note here, many FTD patients successfully pass a DMV test. Driving around the block isn’t quite the same as driving at 80mph on the freeway.

There are things you can do. Sneaky things. Here are the promised top three:

1) Hide the keys. A little obvious but sometimes works. Help to look for them. You may have to sometimes suffer a torrent of frustration and abuse. But it’s better than your loved one going out with a lethal weapon (the car) and hurting someone or themselves. After a while they’ll forget what you’re looking for.

2) Get rid of the car. Of course that may mean you don’t have one either. But if you have a second car that sits home while you are at work, remove the temptation. Tell them it’s in the shop. (See numbers 1) and 3) re. forgetting)

3) Substitute a fake set of keys that don’t work. Then say you will get them replaced. At an indeterminate time. Or say the car is broken. You’ll take it in to the shop. They’ll forget eventually.

 Ok that’s probably actually four things but I snook an extra one into number 3) It’s allowed -it’s my blog. You’ll come up with some ideas of your own probably. It’s surprising how inventive you can become. At first it feels deceptive. But you’ll soon get used to it. For the sake of your own sanity and peace in your home. More to come on that subject soon.

Driving may be your beloved’s last link with ‘feeling normal’. Driving is a symbol of freedom. Of not relying on anyone else. The yellow light means they have to rely on someone else. The yellow light means the chauffeur gets to decide when, where and with whom they go out.  It makes them mad. The yellow light in FTD, unlike in reality, stays lit the longest. That’s why this section is the longest.

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Red. The red light, as is universally recognized, means stop. Stop moving. Stop driving. Stop everything. Red means everything is on hold. Red means no more. No more driving, eventually no more going out at all. No more trips together. No more living as we know it. I don’t mean it symbolizes physical death. In this metaphorical context it symbolizes the end of life as one would prefer it. None of us would choose to be dependent on another for everything. Even the simplest of needs. The reality we would choose is just that. The one we choose. Of all the things lost to FTD, freedom of choice is one of the biggest. Wars are fought over it. Globally and in your house.

FTD robs one of the spirit, the love, the independent thought that our mothers spent most of our formative years cultivating. FTD steals away that which makes your loved one unique.

Driving, traffic lights, junctions. The road traveled by FTD families is a rocky one.

Proceed with caution, but as always, with love.

Wagons Ro-oll!!

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 “Courage is being scared to death – and saddling up anyway”

– John Wayne

My husband  was a keen ‘cowboys and indians’ fan. The old-fashioned movie kind, not the sports teams. He loved all those Westerns with their battles on horseback and being surrounded by ‘the savages’. Heroes like John Wayne,  Alan Ladd, Randolph Scott. He always wanted the Indians to win. When he played as a kid, he was always Geronimo.

Since he has been gone, I have been reminded of his favorite movies about the pioneers and their wagon trains across the country. The family who loaded up everything – the special china and their piano (clearly things they would need along the way!) into their covered wagon to start a new life in the West.

As they traveled, some of them succumbed to illness or attack. The loved ones would be buried in the desert and the rest of them would carry on “to Oregon”. I am carrying on. Not wearing a shawl and pokey bonnet, but carrying on to Oregon. (Metaphorically speaking)

As the old song goes  – “what I did for love” I did what any lover and partner would do when they are joined to someone in such a way that there are times when you really don’t think you can go on without them.

At the risk of sounding corny, if you love someone, you will preserve their dignity for no other reason or reward than that you love them. Love is an intangible thing. So how is it then that it is so powerful? How can it make you do what you do when FTD takes a hold?

  •  You are bound by such emotion that you cannot control it
  • You can overlook horrible behavior because you know it won’t last.
  • You secretly hold hope that maybe it isn’t true and that it may be a mistake
  • You know the person so intimately that you can almost predict their behavior even in an unpredictable disease like FTD.
  • You want to defend them even though you know it looks weird to other people
  • You want to do whatever it takes to make sure they are safe and comfortable.
  • You feed them cake and ice cream because you know they love it and healthy food doesn’t matter anymore.

“Love conquers all” right?  Only problem is, we live in the 21st century and not that of the author of this wisdom, Virgil in the year 40 BC.  We have different problems to conquer. Yes, there were diseases around in Virgil’s day that no-one could explain. But people were also likely to die as a result of invasion from foreign forces. I guess you could say that diseases about which we know so little are the new ‘invaders’. They’ve been around for a long time but we still don’t know how to cure them. Even love can’t conquer that.

FTD and other dementias are just a small example. Huntingdon’s disease and cystic fibrosis being others. The cruel thing about any early onset dementia is that you have a good life dangled before you like a carrot. You meet your love, raise your children, work hard, hoping for a reward later. FTD takes that reward off the table. Your love is tested to the point of screaming.

On the trail to the West, you had no choice but to carry on after you buried someone. If you didn’t you would be left in the desert to die too. I am carrying on along the trail. I don’t know where we’re going, when we will get there, or even if we will, but I’ll keep driving my wagon. Right now our team of horses is down to one and our wagon has lost a wheel. But Oregon is not in sight yet, so I’ll keep going.

For him, for us and all the other pioneers who didn’t make it to Oregon.

I will try and do all the things that he would have wanted us to do together. Richard Bach says: “True love stories never have endings”.

Helping my love to the end of his life was my vocation. Perhaps it was why I am here? To lovingly help him to the end of his part of the journey along the trail.

I scattered some of his ashes in the desert. A place where he often wondered “How did the Cavalry ever find the Indians?” when he looked at the vast open spaces of the Arizona landscape.  We made our home in the very place that was the stuff of his childhood dreams.

Our wagon rolls on.

Mens Sana in Corpore Sano (no – nothing to do with Saunas)

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“Healthy Mind, Healthy Body”. Sadly for someone with FTD, this is almost never true. The disease often strikes people who are generally otherwise healthy, by chipping away at their frontal lobe. This insidious waste begins with a few word-finding issues – a ‘slip of the tongue’ for you and me; a signal that something is wrong for the affected. Overall fitness and health is relatively unaffected.

Throughout the five year span of his illness, my husband remained strong, fit and active. Walking and getting up by himself – even up until about two weeks before he died in fact. He never had any physical ill health until he could no longer eat or drink well. Clearly one cannot last for long if you can’t do that. Here’s a few things to remember:

  1. Keeping your body healthy may not always mean that your mind will be so.
  2. If you and your partner are unfortunate enough to have to endure this journey together, remember that forewarned is forearmed. There are so many things out of your control at this point that just going with the flow is the easiest option for everyone.
  3. If it’s not hurting anyone, leave it alone. Choose your battles.
  4. People with FTD often retain intellect for a long time into their disease. So coupled with physical strength and health, this can make living with and caring for them very difficult indeed.
  5. As the disease progresses, cognitive skills – insight and logic for example, decline at a fairly rapid rate. But this is very insidious and often barely noticeable for weeks at a time.
  6. What is noticeable is the strength and will that goes along with the irrationality. It’s sort of like having a six-year old “Incredible Hulk”. He can push things (and people) around, throw things and resist with great strength.
  7. Retain a sense of humor at all times.
  8. You cannot reason or argue that they may want to do it another way. You have to concede, wait and go back later. Re-approach and use the fact that they have forgotten to your advantage.
  9. Unfortunately this may not work in Safeway when he is trying to take someone else’s cart, or chastising them for wearing their pajamas and slippers to the store. Or laughing out loud and pointing at someone’s haircut/shoes/outfit.
  10. If you’re five foot nothing and attempting to control this behavior in a fit, strong man of fifty-four – Good Luck! Learn some new techniques (see below).

Number 7 is probably the single most important thing.

There is lots of information and support available at www.theaftd.org

Many support groups are springing up as FTD becomes more frequently diagnosed. Even if you’re not a support group type of person (I wasn’t), you will meet people there who are going through very similar things to you. They are comfortable discussing incontinence, public urination and swearing. You will not be telling them anything they haven’t heard before. New information is discovered every day. Sharing yours helps other people.

Having an FTD diagnosis will make you rethink your entire life, philosophy and values. You will find the mental strength to combat the physical stressors. Hang in there.

Posh places, pride and poo -the top 5 things you need to know about Residential Dementia Care.

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Loving, middle-aged couples who have been married for a long time tend to like the finer things in life. If you have been lucky enough to get to a point in your life where you don’t have to live on Ramen Noodles or biscuits and gravy, (unless you want to)  your vacation choices will probably include 4 or 5-star hotels, Sunday brunches and traveling to exotic destinations. Your appreciation for spending time together while someone else waits upon you has probably grown immensely by this point.

Sadly, if you decide to choose to place your loved one outside of your home due to FTD, it is probably wiser to abandon these tastes and change your perception of what actually goes on in these places. You may decide to take care of them at home. This will entail you giving up your sole source of income and relying on the State or your savings to provide for you. Or having someone come into your home to care of your husband/wife etc. This is much more difficult than it sounds. Financially and emotionally, caring for someone with dementia is extremely wearing on the body and spirit (yours). Either decision is terrible. Neither decision feels right. But you know it what you have to do. You know that you cannot go on forever without some kind of help.

Just making the decision to either get someone in at home to help you, or send the person with FTD to Adult Day Care and then some kind of residential care arouses feelings of guilt, shame and fear. Terrible decisions that no-one should have to make. But we do. We have to. For our own sanity and safety often we have to.

Should you decide to place your darling into a residential facility, you will find that like hotels, there are vast disparities and levels of “luxury” (as they describe their environments). Help at home can often be wildly varied too. Although most home caregivers are well-meaning and kind, they are often unreliable. This means that you will have to have an extremely sympathetic employer to help you cope with those times that your “Nanny” lets you down. Just like Day Care or in-home care for your child, the standards vary vastly from one to another.

I used Adult Day Care, in-home care and three different residential facilities for my husband. This was over a period of one year. It was a roller-coaster time. Emotionally, financially and physically. So, here are the top five things you need to know about placing your loved one into some kind of institution (yes, I hate that word too but there it is)

1. Lovely chandeliers and carpets don’t matter. Manicured gardens and chef-prepared lunches don’t matter. A fabulous ‘Activities’ calendar doesn’t matter. People matter. People who care matter. There are people who care. They are the ones you want. You will know when you meet them. Trust your instincts. Take someone you trust with you who can be more objective and less emotional.

2. Many places just want your money – they can smell your desperation. They know that you are at a breaking point and are emotionally incapable of many things. Usually by the time you make the decision to place your loved one into the care of these people, you have already been to hell and back and don’t really want to go there again. They don’t care about that. They don’t care that you are waiting for someone to die. Someone you love and trusted and who is changed beyond all recognition. They don’t care that your life is in smithereens. They just want to keep their business running. They will agree to take everyone and then call you in the middle of the night to say they don’t want them anymore.

3. Not all places are like the ones described in point 2. There are some really, really great places who will care for your husband/wife/mother/father/sister/brother/friend even better than you could have. You just have to find them. I found two. They both had wonderful people who cared. Talk to people. Just don’t be swayed by “Swag”.

 4. Don’t be upset when you find your husband wearing someone else’s underwear, slippers or glasses. They don’t care. All ‘ownership’ is gone. They no longer have a sense of pride.

The staff try their best to keep track of things, but residents have a way of finding others’ belongings and putting them on or hiding them away. Ask yourself “Is it that important?” Or is it more important that he/she is at least wearing clothing? (This last point comes up more often than you’d think). Accept that your beloved will now probably behave like your five-year old used to. Sad but true.

 5. You can enjoy time with your loved one while someone else does the hard work. Doing the hard work is noble and commendable if you can stick it. But don’t beat yourself up if you can’t. Caring for someone with FTD or any other kind of dementia can be physically draining (and often dangerous too). Let someone else clean up the poo and feed your love whatever they will eat. Then you can spend precious time with them; time that is slowly ticking away.

 Time to laugh, love and remember. Precious time.

For Love & Sandwiches

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I have noticed some things recently while looking at blogs, articles and books about FTD and other dementias. Firstly, most people are writing about Alzheimer’s Disease. Secondly, writers are generally expressing the difficulties they are experiencing with day-to-day caregiving of a parent.

 

We Boomers are also known as the”Sandwich Generation”. That is, that we are ‘sandwiched’ between caring for our children (and hopefully getting rid of them from our homes) and caring for our aging parents. This all within the context of our own aging. There are books, Facebook pages, blogs, websites – all dedicated to helping or giving advice to caregivers of demented parents.

 

What jumps out the most to me from my reading is that the people who are taking care of parents have a totally different perspective from those who are taking care of a spouse or life partner. When your spouse is affected, you have shared a life, bed, trials and tribulations with someone for forty years – your whole adult life in fact. Then along comes this bastard disease and screws everything up. Everything. 

 

The assumption is that two people who love each other (in the biblical sense) also “care” for each other. If they didn’t one would hope that they parted long before dementia set in. If they didn’t then dementia would almost certainly help them achieve this. When it comes to “caring” however, then it’s a whole different can of worms, ball of wax, ball game – whatever metaphor you choose. Caring for your partner, your equal, your lover, your protagonist – well that’s hard. Because when you said “In sickness and in health” (if you did say that) when you were twenty years old, you didn’t really think it would ever come to that did you? So now, here you are – thirty six years later. The genie has come back to make you fulfill your promise. Make good on your vow. Promises, promises. 

 

Caring for a person with FTD or Early-Onset Alzheimer’s is different because of the young age of the onset of the disease (usually around age fifty, maybe earlier). Watching your husband (I am using this word but you can substitute wife, partner, lover in here) disappear before your very eyes is a strange phenomenon. He occasionally pops out to say hello (or more usually – “F**k off!”). But generally speaking he does not exhibit behavior expected of a fifty-six year old father of two. He will touch you and kiss you just as he has for almost forty years. But the emptiness in his eyes makes you feel like you are being molested by a stranger. 

 

So if he/she will even allow you to “care” for them – physically and parentally, there is a little part of you that shies way from it. Even if they still recognize you, it can be fleeting. Sometimes they will acquiesce to your care, sometimes not. They are changed, altered, distant. But often physically healthy and strong, very strong. 

 

Taking care of  a parent, the role reversal is probably the most marked change. The “Sandwich filling” (son or daughter) picks up where they left off taking care of their own kids and start the whole process again. Only this time with the person who did the exact same things for them as they grew up. Alzheimer’s Disease generally affects people in later life – maybe in their sixties, usually seventies and eighties. As a rule. People who are grandparents and great-grandparents.

 

Somehow this seems a more natural process – grown children taking care of their parents. It happens all across the globe in all cultures. More so in some than others, elders are revered and accepted as they are. As they become less physically strong, their wisdom and experience continues to be respected. Sadly when the disease affects cognition it becomes difficult to continue to recognize this wisdom. Time is consumed with the daily physical care. To a certain degree, it is expected of us all. Even if the caring extends to placing their parent in an institution, it is still, for the most part, considered caring  – expensive, but still caring. 

 

Parental caregiving is different from spousal caregiving. We don’t choose our parents. We don’t fall in love with our parents, aren’t intimate with them, have children with them. We don’t eat Ramen noodles together and sleep on friend’s floors. We don’t go out dancing with them until 3 am and then go home and eat ridiculously un-nutritious food and laugh because we are a little drunk.

 

We love our parents. We care for our parents. We take care of our parents. Just as they took care of us when we were born. It is the cycle of life. 

 

We love our spouses. We care for our spouses. If we have to, we take care of our spouses. It’s different. It is not the cycle of life.