Oops, Practice What You Preach

I often make suggestions to both those with FTD and their caregivers. Sometimes, though, I forget to make those suggestions to myself.

My husband's Alzheimer's dementia was noticeably worse the past two weeks. He was experiencing urinary incontinence. It also seemed his confusion had worsened significantly. I was coping with it. I was doing two loads of laundry a day which added to my fatigue from FTD. The confusion broke my heart and if it weren't for the apathy bestowed on me by FTD, I would have been crying. I kept feeling like crying, but just could not.

Finally, he mentioned to me that his private areas were itching. I tried to kick myself in the butt, but had to settle for cuffing myself upside the head. Of course! Check him for a UTI!!!

I was lucky that I had no trouble reaching our family doctor because I was totally out of home test strips. (Suggestion, make sure to keep these in hand. I just bought a bottle of 100 for less than $10, so that was not the problem, I just forgot I needed to replace them when they ran out.) I buy ones that test for 10 different indicators of infection. They are not 100% accurate and I know my doctor always wants to run a urinalysis to verify the strip's findings, but when they turn out negative, I am comfortable that it is accurate.

Back to our doctor. She is wonderful and knows us well. She allowed my sister to pick up a specimen bottle and after I got him to fill it, my sister then took it to the lab. The doctor called first thing in the morning and ordered the meds to be delivered by the pharmacy. By 11 a.m., he had his first dose. I was extremely lucky that my sister just happened to be coming by that afternoon and that she was happy to help out. Can you imagine how stupid I felt?

In addition to the suggestion of keeping the strips on hand and not missing the symptoms like I did, I also encourage you to develop a close relationship for your family doctor. To me, once you have a proper diagnosis, I saw no sense in continuing to see a neurologist. First of all, all of them in this area are in the same practice and they all misdiagnosed my FTD as depression. Arrrggghhh!  I would have to travel 100 miles each way to see the neuropsychiatrist who correctly diagnosed me even before the scan that confirmed it. Plus, a neurologist is interested, for the most part, in your brain, not things like your urinary tract.

The other good relationship that can become a life saver is your local pharmacy. If I continued to use the mail-order pharmacy, I would save around $20 a month, but if I had questions or needed a quick delivery, I was out of luck. I actually changed my local pharmacy as well recently because a local one, whom I trust, became a "preferred pharmacy" with my insurance company. They deliver all day and into the evening and will deliver anything in their store to me because they understand our situation, even milk or ice cream!

I have heard horror stories about prescriptions filled by chain box stores with pharmacies being incorrectly filled that either did or could have caused serious outcomes.  I am not talking about chain pharmacies, just chain stores that happen to have pharmacies. Using this type of pharmacy, however, can often save you a significant amount of money. I encourage you to always, always, always check the prescription when you get it. If the pills look different, please ask rather than assuming they switched to a different company.

Something really upset me this week. I noticed several people trying to bring politics and social issues into the FTD support groups. There is no need for that, none at all. We all, FTD'ers and caregivers have an important common interest. We do not need to be divided by outside issues. In my opinion, we need to put all these personal preferences aside and stick to supporting each other. 

I do not care what your religion is, what your sexual preferences are, who you voted for in the last election or plan to support in the next one. If you are dealing with FTD, you have my love and support. To be truthful, I don't care about any of those things in my personal life either, as long as it is presented in a way to support your own beliefs rather than to reject everyone else's. 

As long as I have gone this far, I am going to address one more thing. No two people are alike and no two cases of FTD are exactly the same. Many of us deal with it in different ways. Who cares? Some people can come across as whining or depressed or desperate. Guess what? That is most likely how they are feeling at that moment and they need our support and encouragement even more at times like that.

To me, using any derogatory term to describe an FTD'ers or caregiver is inappropriate. We all address our illness in different ways. Some are able to set their diagnosis aside for the most part and to keep their lives as close to pre-FTD as possible. Others are unable to do that at all, quite understandably. Some choose to be open about their diagnosis and all that is happening to them because of FTD. I honestly believe that those or speak out, or write about, their experiences are hoping that it just might help someone else. I know that is why I do.

I have actually been accused of not really having FTD, that my symptoms aren't bad enough. Can you even begin to understand what that feels like? 

Okay, I will climb off my high horse now. The lessons I learned this week are to be more observant of new symptoms in anyone with dementia and to be more accepting and supportive of everyone dealing with FTD because we are all in the same boat.