Thanks to FTD – (un)Happy Birthday! Cheers! (with just a little dash of sarcasm)

eeyore birthday

Birthdays don’t have the same meaning once FTD takes a hold. For you or your loved one. Somehow the apathy, lack of insight and total indifference to anything once joyous overwhelm all concerned. Despite best efforts, it is difficult to enjoy those high days and holidays (more to come on that topic in the next couple of weeks).

Anyway, tomorrow is my birthday. My birthday three years ago was a significant turning point in our lives. Not least my husband’s. It was the last day he spent at our home. At three o’clock that afternoon, after waiting around the house all day making phone calls, faxing papers and hiding my anguish, I took him to an inpatient psychiatric unit where I left him, never to return.

So, as hard as I might try, it is difficult for me to “celebrate” the day of my birth anymore. The day comes tinged with sadness and a sense of disbelief that it was three years ago. A feeling of shock that I actually went through with it and took him. Despair (still), that I had to do it for the sake of all our safety, not least his. You may come to (or already have) a similar point in your FTD journey.

It is such a personal, individual moment, just like a birthday really. It belongs to you and you alone. Your feelings as you take those steps to changing your lives forever will be unique to you. Painful, baffling, fearsome, but unique. For me, that turning point shaped the next three years and still does to a certain extent.  If you have been together for a long time, as many of us have, or your FTD’er is your parent, making the decision to move them out of your home is devastating. Then, once the decision is made, you have to actually do it. That’s the kicker. Physically taking them and knowing they are not coming back. They are blissfully unaware of course. Well, if you have played your cards right and not told them. Please don’t tell them. Don’t discuss it with them. Don’t ask them. They are no longer your partner in these kind of decisions. You have become a parental figure and must make these agonizing choices for them now.

They won’t like it of course. Anything that changes their routine, their comfort zone, will not be popular.  That’s why you are not going to run it by them for approval. It’s like choosing your child’s elementary school. You don’t really consider their preferences when they are five after all. It’s the same for your FTD’er. Not capable of making informed decisions or good choices.

You may find it hard to find a “good” place. Of course “good” is an entirely subjective term. A psychiatric inpatient unit is only a temporary measure. After that you will need to find a more permanent residence.  One of the most difficult things is not having the person who previously shared these decisions with you at your side. Hopefully, you have a family member or good friend who will help you. Someone who can remain objective and is not swayed by the emotion of actually doing what you’re doing. Rushing around town to look at suggested places is, at the very least, stressful.

You don’t really know what you’re looking for or at. mazeYou don’t really want to do it, so you still hang on to the faintest hope that even now, there may be, just may be, the possibility that it will all be ok and you can take them home after all. Depending on where you live and how much financially you have to contribute, there are other stressors too. Finding $6-8,000 a month is no mean feat. And believe me, not everyone has your best interests at heart. Don’t assume that because they claim to be healthcare facilities that they actually care about you or your FTD’er. It’s big business, residential care.  Choose carefully and don’t give in or give up. Don’t believe everything you are told and don’t settle. Make it very clear from the outset that you know what’s what (even if you don’t, you will find out). Speak authoritatively and make it clear that you are the one in charge of your FTD’er’s care and they are merely working for you. Which they are. And for $6-8,000 a month, they’d damn well better be good.

So, now you’ve actually got them to their new digs – now what? What does that mean for you? Thanksgiving 2011 was a quiet affair in our household. We spent the day at home, each of us internalizing what had happened and thinking about how things were going down at the psych unit. I called of course, but my husband was still raging and unable to understand what was happening. He was quite dangerous at that point, throwing furniture and trying to escape at every opportunity. After a few days of medications, we were able to visit and talk to him on the phone. But he never understood that he would never come home again. So, for the person with FTD, the transition from home to residential care means change, uncertainty, fear and insecurity. All the same things it means to you. Your life has taken on new meaning. New horizons.  A different life.  Regardless of your relationship before, moving your FTD’er into care is unsettling for everyone. But it has to be done sometimes for safety, for peace of mind.

So, my birthday brings mixed emotions. My husband’s birthday is ten days after mine. This year he would have turned sixty. The fact that many of our friends are celebrating this milestone too over this past year and into next brings feeling of envy and sadness. The parties, the cruises, the trips and other celebrations all serve to remind me that we will never experience those things together again. I am happy for them of course and don’t begrudge them any of it.  I just miss my darling at this time of the year more than any other. From October to January, we had our anniversary, both our birthdays, and his favorite time of year – Christmas and New Year. So, I approach this upcoming holiday season with more than a little heaviness in my heart. It’s my favorite time of the year too, at least it used to be. I still like it but it no longer holds the same excitement.

So, Happy Birthday to both of us. I’m sure that wherever he is, he is raising a glass of something in a toast.

love champagne

13 thoughts on “Thanks to FTD – (un)Happy Birthday! Cheers! (with just a little dash of sarcasm)

  1. Happy Birthday to you even though the day is now associated with a traumatic time vs. a celebration of your life.whether you choose to spend it quietly or with friends and family, I hope you will have birthday cake, my favorite way to spend my birthday. My last few birthdays, since FTD came into our lives, have been painful. Last year my husband never acknowledged my birthday. At the time, last March, Rob was still very functional, but he was angry at me. He had been angry for about 6 months and the anger and rage were all directed at me. He was convinced I had coerced the doctors to say he was sick. ( I am a nurse, like you.) he had delusions and paranoia. In April, I took him to a geriatric psychiatrist, the best decision ever for us. He started my husband on Risperdal and Exelon patches. Both drugs have made tremendous positive changes for Rob and me, at least for now. The anger and rage are gone. Rob remains emotionally detached from me, does not like to be touched or kissed or even to hug me. He can be coaxed into saying he loves me, but it has no meaning or substance. My family tells me to remember how much he did love me before FTD. This damn disease stole my husband from me and his life from him. I try to enjoy each day as much at possible, but when my 54 year old husband acts and looks 74, it makes me so sad and I miss him even more.
    Anyhow, I hope you can find the ability to reflect on earlier birthdays, before FTD took your husband from you. In Friendship, Sarah Pawli

    Liked by 1 person

    1. Thanks Sarah. I really relate to your comments about losing your husband before he is physically gone. I think that is one of the hardest things to bear. It may be because we know what’s coming. My thoughts will be with you over the next few weeks. I know how hard this time of year can be for everyone dealing with this terrible situation. x


  2. “Speak authoritatively and make it clear that you are the one in charge of your FTD’er’s care and they are merely working for you. Which they are. And for $6-8,000 a month, they’d damn well better be good.”

    This I always did. I also walked strongly and with purpose. Make them, the medical staff, well aware that you are the daughter/son/spouse and your father/mother/spouse are the only one they should be dealing with. But, you’ve got to remember that if they’re busy with someone else, then the other person needs their attention at that moment….after all, when your loved one needs their attention, you want them to give him/her their undivided attention. Be nice but be a bit bossy.

    Also, act like a sponge and soak up every bit of new information that you can. And, believe me, ALL of it was brand new to me.

    Very nicely written. I’m so sorry your birthday has such a sad meaning now. I hope as you celebrate many, many more birthdays that association will lessen. I know exactly the day I took Dad to memory care because it too is a day of note to me.

    Liked by 1 person

  3. That’s a great analogy – making decisions about your child’s elementary school. You are right, you have to make these decisions for your FTD er and telling them is not even fair as it will change nothing and fill them with anxiety. I imagine, that taking as many familiar objects as are permitted with you would help to ground them in a new place.


    1. I thought that too, but despite my best efforts, my husband never noticed his pictures or photos or familiar objects from home. He was so anxious and “up” all the time, he could barely even sit still half of the time, let alone look at things. he would wear himself out being busy doing nothing 😦


  4. Today when I visited my husband at the nursing home he has been at for 20 months, I was aware that I am pushy and maybe alittle bossy when I am there. It has to be. His roommate just moved out so I was like a little kid-more room, I can play the radio louder, leave the curtain more open, breathe “better”. Jon, my husband is in the late, late stage of FTD so he was unaware of any of this. To try to connect this to your post, any special days-birthdays, holidays are so emotionally heavy-people in my sphere try so hard to make me happy or make me feel special and sometimes I can tell all I want to do is be away-there just isn’t one way to make this seem better. Today I went to a 60th birthday party for a friend of my husband. I calculated out when to get there, to keep myself together and not be sad or only talk about Jon but it is hard, I lasted about 15 minutes and that is what I could give, no more. I miss Jon and he is still here.

    Liked by 1 person

    1. I am so very sorry that you have to endure the “missing in place” scenario that is so very painful. I know I would (and sometimes still do) just be able to hold out at functions until I left and then would cry all the way home. Or feign some kind of “enjoyment” – for others’ sake rather than mine, because I knew they couldn’t bear to see me so unhappy. My thoughts are with you as you continue on your sad journey


  5. Hi there
    I know this is an old post of 2014 and now its 2017 but I loved your story and how it is like mine now. My husband has MND and FTD so Jim is not the man i knew at home. He slowly got worse always demanding and not like the guy I knew. Always negative and no nice loving things to say. I scour the internet to find out if this is normal behaviour to the woman he supposed to love. But realise now he is not the man I knew and met in 1981. Thanks everyone at least I know its normal but as you say your life is changed and when you do look back its has changed forever.


    1. Hi Annie
      Thank you for reading my blog. You are so right, your husband is not the man you married and has become one who is very hard to love. I understand how that is. I am so sorry that your world has been touched, and not in a gentle way, by FTD. It is very painful for all concerned. I hope for calm and love for you and your family.
      Debbie xx


  6. I came across your blog after searching for FTD and unhappy on Google. Although I am inspired by and enjoy reading about families who find a way to thrive and find happy solutions for their FTD management needs, I found the need to commiserate with others who haven’t had it so easy today. For some reason fall makes me think of my husband John. We fell in love in the fall, loved the season of fall together, and also his birthday is in the fall. And he used to talk about new beginnings each fall with special plans and ideas to enjoy our time together. Hurts.
    So I found your blog…
    Thank you for sharing your heart and your sadness. My husbands FTD was very hard on me too and now we are apart. I still love him and miss him many days. Friends and family either can’t understand or won’t and mostly I keep those feelings to my own self. So listening to you helped me.
    Know that this isn’t easy. You are doing your absolute best. There are others who can relate to you, who care and who are willing to connect.
    These days, I put all my pain into running and now I am able to go over 6 miles. I am training for a half marathon and actually fundraising to support the AFTD, the leading FTD nonprofit in the US. I am going to be 57 and my husband is turning 63 this October 11th.
    Put your pain into something that turns it around when you are able and yes, mourn aloud. We need to weep with those who weep, not just laugh with those who laugh.
    I wish you well.


    1. Hi Karen
      So very sorry to hear your story. There are really no words to describe what FTD is like for those watching it happen, but I try and tell it as it was for me and us. After my husband died in 2012, I poured my heart and soul into putting our story together into a book -“The Dance”. I felt it was something I had to do, and it was very therapeutic to write the book and the blog. Somehow it put things into perspective, although it did not really lessen the pain any, sad to say. In my experience, the pain does not go away, it just eventually finds a place deep in your heart and comes out every now and again to say hello. In September, it will be five years since he physically left, many more before that mentally of course. I am currently working on a new book about some of the things that happen to us after they go. I love that you run and have goals. Those things will become even more important going forward. You may feel at times that you can’t go forward, but you will find the strength to find a way. I wish you peace in your heart and strength in your love.
      Debbie xx


      1. I’m glad to read your reply because I wasn’t sure you would still be on line with this blog. First, I am definitely going to find and get you book. The other thing I wanted to share is that although my story also needs to find its way out, it is hard to tell because my marriage ended up in divorce. The blame, the guilt and shame was really rough. I was the one who got the diagnosis and applied for the disability and then I had a breakdown. After a year and a half, I put things together again and I reconnected with my husband and his mother for a year hoping to create a care plan for him, working together. However, his family withheld information from me, secretly took power of attorney, and fought me about an adult day program I found to relieve his mother of the burden – just one day a week fro 5 hours. Without their support I was powerless.
        I need to talk it through because I fully support the “cause no harm” policy. All if forgiven on my end but telling my story may appear to be blaming my husbands family. I wish I could work together with them to give my husband the care he really needs but I had to walk away from the situation. It still plaques me.


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