When you get to the end of your rope, tie a knot in it and hang on – Franklin D. Roosevelt
You will have to make some changes in your life if you are a caregiver of a person with FTD. It’s no good fighting it. Just has to happen. You can try to cling on to the vestiges of your old life and your old husband/wife. But in the end, you are the one in charge. You are the one everyone looks to for answers. You will question your own judgement and decisions. Other people may do that too. That’s something else you’ll have to handle. It’s ok. It’s their problem not yours.
1. Don’t sweat the small stuff
Yes, I know this is a cliché, but it’s so true. You will realize as the illness progresses that your life is so different now. There’s no going back. It will never be the same again. Corny sayings like “cherish every moment” are familiar for a good reason. Trying to maintain the status quo will be impossible and it will drive you nuts if you try and do it. This means:
♥ The things that your FTD’er used to be in charge of are now your responsibility – banking, paying bills, clearing the yard, getting the car serviced, whatever.
♥ To be able to do all of that and all the things you did before as well, something will have to give. The small stuff – being too houseproud or having a set schedule. Needs to go. Structure is good for FTD but it has to be flexible structure (I know – a contradiction in terms!)
So, flexibility is the word of the day, week, month, year. Things may change on a daily basis at certain times. It’s just not worth your sanity to rail against it. Really. It’s not. Just go with the flow.
If the dishes don’t get washed tonight because your beloved won’t go to bed/get a shower/just wants an argument, leave them until the morning. They’ll still be there. At least you won’t have been tearing your hair out trying to get everything done. The world won’t end because a few dishes didn’t get washed or you didn’t tidy your yard. Put things into perspective. One day you will think your world has ended for a real reason.
2. Stop fighting the inevitable
Are they refusing to get in the car when you absolutely have to go somewhere? Are they changing their clothes three times while you are trying to get you both out the door so that you can get to Day Care/work on time? Of course they are!
Do they refuse the food you’ve slaved over cooking and only want to eat Cheerios? Then give them Cheerios. Or chocolate or cookies. Love and cookies mean the same thing to them now. Accept it.
It’s not like you can spoil them. They’re not a child. It’s just so much easier to give them/do what they want than to try and fight it. They are not going to learn that if they have a tantrum they’ll get their own way. They can’t learn anything. They deserve what they want – they’re the ones with the terminal illness remember?
3. Accept help from as many avenues as possible
You can’t do it all. It’s not physically or mentally possible. If someone wants to cook you two a dinner let them. If someone wants to come and sit while you go out, let them. It may go against the grain (it did for me) but do it anyway. If someone tells you “I wish there was something I could do” tell them there is. Make a freezer meal, collect your dry cleaning, pick up something from the store, wash your dog. Anything that takes time that you don’t have. Because just spending time repeating, reiterating, having do-overs, is exhausting. Speak up. People will be willing to do more than you think. Just ask them. They can always say no. You’ll learn who your true friends are.
4. Spoil yourself
Go to the gym, spa, nail salon, hairdressers, football/baseball game. Go for a walk, get a hot stone massage. Take time out. You will burn out really quickly if you don’t pace yourself. It’s not spoiling yourself. If your loved one could, he/she would still give you gifts and little treats right? It’s the same thing. Only you’re giving it for him/her. So go for it.
FTD is a marathon, make no mistake. You cannot ‘soldier on’ and still be the support that your FTD’er needs. It’s not selfish. It’s not uncaring. They need you. You can’t help them if you’re exhausted. Don’t be afraid to do something for you.
Weird huh? Laughing at a terminal illness? Yes. People do it all the time. Don’t let the bastard disease win ALL the time. My husband used to laugh uncontrollably at “Wipeout” in the mid to late stages of his disease. He would never have thought it funny before. Him laughing made me laugh too. See the humor in the ridiculousness of what is happening. Boots in the backyard full of rocks is sad, but quite funny too. Washing your hair with shaving foam is funny too. Not laughing at your loved one, but at the situations that arise.
Accept that which you cannot change. You are stronger than you think. I handled things I could never have imagined. Never would have wanted to. But I did it. You can do it too. Sometimes you just don’t have to think too much. In the immortal words of Nike “Just Do It” – whatever it is. One of the reasons we find it hard to accept is because we don’t want it to be true. The stubborn part of your brain refuses to deal with it. It goes on for so long, you think it will never end. So, you fool yourself into thinking that it never will. The human spirit is indefatigable. Hope springs eternal. If there is no end, then you don’t have to accept it. But there is an end. It will be here before you know it. Acceptance will help you deal. Acceptance will help you control what is happening. You will be calmer. You will be more articulate in speaking up for your loved one. You can fight in different ways. But you have to accept.
7. Give yourself permission
…to be sad, angry, frustrated, tearful, sarcastic, funny, unkind, exhausted.
It’s all good.
Love cannot be denied. Even if you have lost your love for your partner in FTD, you have to love yourself enough to know when you have done enough. Be honest. If you don’t love them enough to do it – then don’t. Find another way. Or accept it. You can love someone in a human, caring way even if you don’t love them as your husband/wife anymore. But it’s a big ask of anyone.
If you love your partner as much or more than you did before FTD, you will find that love will sustain you through the darkest of times. It won’t seem like it at the time. But it will. You will have to deal with horrible things, but strength will come from your love. From knowing that they would do it for you if things were reversed. You will feel love from them even when they can’t tell you anymore, right up until the end.
You will feel it.
- Compassion Fatigue: 5 Sure-fire Ways of Recognizing and Preventing Caregiver Burnout (musicwithharry.wordpress.com)
- Dementia: the journey of caring continues (swapnawrites.wordpress.com)
- Giving Family Caregivers the Respect and Support They Deserve (aarp.org)
- Behavioral and Psychological Symptoms of Dementia (caregivertwopointoh.wordpress.com)
- Six Signs of Caregiver Burnout (centraldallas.myhomecareblog.com)