At the end of 2013, I asked if there were specific questions to which you would like me to respond. The responses and subsequent questions and comments were interesting and varied.
Most people seem to want to know what it was like for me. How did I cope? What little things made a difference to me? What gave me strength?
I have also been asked – How long was my husband ill for? How did I know when to move him into residential care? What was that like for me?
Other people seem worried by what moving forward to the next stage will mean. For them, for their family, for their loved one.
There are a million questions it seems. Obviously I don’t have all the answers. No-one does, nor can they. The uniqueness of every person means that we cannot generalize. The general rarity of FTD in relation to other dementias like Alzheimer’s means that the answer for one person may not be right for another. It seems that no two people or their caregivers have exactly the same experience.
So I feel that all I can do, post by post, is to take each of the questions and give a summary of how I dealt with that particular problem, or how someone I know dealt with it. Hopefully, you will find ideas to create a solution to your problem of the day, week or moment.
Well, mainly my family and friends. Without them I would have gone completely insane. Their unconditional love and ability to know when I just needed someone on the other end of the phone was uncanny. To just listen to my crying at the other end of the phone. Just to hold my hand without speaking. To go and look at Care Homes for my husband, even when they didn’t want to.
I consider myself lucky in the extreme to have them in my life. My coworkers were amazing. Every day. every week. Every month. Listening, covering for me. listening some more. Shoulders to cry on, hands to hold. Hugs to give.
For three years, I had to put my usual fierce independence aside and take the help that I had always eschewed in the past. I could not do it alone. Don’t ever think that you can. Don’t even try.
I know people who had to do much of it alone. They were not as lucky as me. They had no family to speak of. One woman would tell us at the Support Group that her in-laws would not believe what was happening to their son. They refused to accept his illness. They accused her of controlling his life and keeping him from them. But they never offered to have him stay with them or come over and stay at their house while she went out for a day. They would never accept that he was no longer capable of making his own decisions. Not until the end stages.
Once he could no longer walk or talk or feed himself independently. Once they saw that his wife had to call the local Fire Station to help get him up if he fell down. Once they saw the soiled bed she slept in next to him every night. Once he died in his own home after she had taken total care of him for three years. Sacrificing her life and her work for him. Without them.
Without them. With the help of friends and respite caregivers. Without his family’s help.
Everyone deals with things in their own way of course, but I doubt she will ever forgive them for being so cruel.
So rally your friends & family. Tell them everything. Pull no punches. It is what it is. It’s not your fault. It’s not your loved one’s fault. There will be unpleasant, painful, exhausting times ahead. Rally the troops and figure out a plan. If it’s early days, ask your loved one what they want. How they want to be cared for. By whom. And what they want for you.
Don’t leave it too late for those conversations. With your FTD’er and your family. Don’t put it off. It’s important.
I was asked what made a difference to me during the time I cared for my husband. It was people.
All the people that make up the circle of my life. They were with me then and they are with me now. They are not just people. They are MY people. I love them.
They know who they are. They love me. When I have red eyes, when I’m sobbing, when I’m complaining, when I was just damn exhausted and could not go on. They helped me go on. They made it possible for me to get up every morning and do it all again.