“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:
- Keeping your body healthy may not always mean that your mind will be so.
- 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.
- If it’s not hurting anyone, leave it alone. Choose your battles.
- 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.
- 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.
- 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.
- Retain a sense of humor at all times.
- 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.
- 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.
- 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.