Saturday, July 27, 2019

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.

Saturday, July 20, 2019

Always Reminding Us

Confession time. I have dementia from FTD, Frontotemporal Degeneration.  What? You already knew that? I sometimes forget about it. Like this morning, early afternoon rather, when I nearly bit the neighbor's head off.

Around 1 pm, when I finally had a chance to go out for our mail and newspaper, a neighbor was doing the same. It is hot here, hotter than usual even for mid-summer. She said obviously I was moving slow today too, that she was not going to do anything but keep cool today. Oh, and they were going out for dinner so she didn't have to heat up her kitchen. It must have been hotter than I realized because I am sure I felt steam coming out of my ears. She was very lucky that my lack of filter was moving slowly in the heat. Or maybe I am the lucky one since I can still live in the neighborhood. She knows my husband and I both struggle with our dementias but didn't even ask how we were doing. That lack of filter that I was fighting sure brought it home that I have FTD.

I couldn't help but think of the "helpful" advisers who tell us to just ask our neighbors for help. Be specific and tell them what you need and they will be happy to help. I will admit, I did live in a neighborhood like that once. We used to have progressive dinners and throw impromptu cookouts in the summer and soup suppers in the winter. We would go to someone's house uninvited because we knew we would be welcomed with a cold drink or cup of coffee. Not so much in this closed-off neighborhood. Make that not at all. We moved here 15 years ago and I still miss that cul-de-sac neighborhood. 

As I walked back to the house, I was laughing to myself the whole way. I wondered if maybe I should have asked that when they go out to get some food for dinner, could they pick some up for us. I would have gladly paid for it. In fact, I probably would have paid for theirs as well. I have asked them for much simpler help from time to time and was given one excuse after another. I don't bother any more so no dinner from the neighbors. 

When I was back in the house, I received a phone call from the pharmacy. They are starting us on pill packs. Now, instead of filling pill boxes, we will have a package with all our morning and nighttime drugs in a sealed pouch, all on a roll. They are ready to start my husband's this week. They couldn't start when we first signed up because they had to work around our refill schedule. 

I was on the phone with this supremely organized pharmacist for nearly an hour. We had to go over every prescription, including dosages and when they are taken. Then we had to do the same for all the over-the-counter meds and vitamins. I was confused half way through the first drug. I kept reminding her that I have dementia and needed her to be patient and to speak slowly and clearly. By time we were done, I realized I was never going to be her favorite customer.  Yep, my FTD is surely busy today. 

I decided to tackle some paperwork that I had been putting off. I pay most of my bills online, but some I just can't. I had one that I would need to write a check for, so I went downstairs to get the checkbook. When I got down there I remembered I had one of the daily loads of laundry in the washer and detoured to the laundry room to switch it to the dryer. I was proud that I even remembered to put a load of sheets into the washer. As I was going up the stairs I was reminiscing back to when I only needed to do laundry once a week. I guess that was my husband's Alzheimer's hitting me upside the head that time.

Did you catch it? I forgot what I had gone downstairs for, the checkbook. So, I head back down. On the way, I wondered if I had locked the door when I came in from getting the mail and paper. I usually leave it open in the morning for my helper to come in, but she wasn't coming today. I went out and was quite proud of myself for remembering to lock the door. After I got upstairs again, I still didn't have the checkbook. I was done. I wasn't making any more trips down. Who knows what I would have done next. Fortunately, I looked at the form and it turns out I could do the payment directly online. I still hadn't done it but knew I wouldn't have to remember to go down and get the checkbook. When I realized payment wasn't due until September, I put the form back into my desk drawer to pay it later, there was the checkbook. I had forgotten that I keep it in my desk now instead of downstairs in my husband's. I was really happy that no one had witnessed this mess. Classic FTD story for sure.

I wish I could tell you that the day got better. After all, it had started with clipping my husband's gnarly toenails, so it had to go up from there. Didn't it?

Of course not, since the neighbor wasn't about to bring us dinner, I was going to need to cook for us myself. Except, 6:00, our usual dinner time, came around and I realized that what I planned to prepare needed to cook for a whole hour. FTD actually came in handy for this one. I soothed my carb craving and soothed my hunger by eating a cookie. Then I handed one to my husband and told him he needed to eat it because dinner would be late. He didn't care, he would rather have a cookie and didn't have a clue what time it was anyway. This time, it was his dementia that jumped up to remind me it is still there.

No way that any of us with FTD can forget we have it. It is always right there with us to remind us.


Sunday, July 14, 2019

Beware of Snake Oil, But Remember Love

I have not posted a blog entry in three weeks. I hope at least a few readers missed me.  Before I get into anything else, there is something I feel I must address.

After posting my blog, comment messages or questions are sent to me via email. They are plentiful and much appreciated. However, there are often enough to nearly fill my inbox. Mostly they are from someone named "Kate." My last post brought me about 20 or so of the same email. It is from someone offering their testimony about how her husband was "cured" of dementia due to an herbal supplement.

This infuriates me!  Not because, they fill up my mail box, but because my research convinces me to believe the treatment is nothing more than a snake oil miracle "cure" that does nothing except cause you to spend money. This is not the only promised cure. There are many floating around out there. 

I will not say there is no use for these treatments. I am sure some of the supplements offer a modicum of health benefits. I am sure, however, that they will not cure dementia.  You can go directly to the FDA website and search for dementia cures and read their warnings. I prefer this site that is easier to understand.  https://www.alzforum.org/news/community-news/dementia-researchers-commend-fda-crackdown-supplement-hype

Perhaps the person who keeps filling my mailbox truly believes what she is saying. Perhaps she doesn't and is not even a she. I have no way of knowing. I do know that before starting any supplements or regimens, you should carefully research it for yourself and definitely discuss it with a qualified physician. Also bear in mind that supplements do not go through the rigorous vetting procedures that prescription medicines do.

If anyone has read any of her comments on my blog, please know that I do not endorse any products or treatments for dementia. Actually, it is the exact opposite.

That said, why have I been missing for a while? Simple truth? I have just been too exhausted to think, much less type out words that would make any sense at all.

Our caregiver/companion (I really don't know what to call her except, maybe, my salvation? How about, for now, I call her Peg?) broke her shoulder months ago and finally had it surgically replaced. She showed up here to work less than a week after her surgery. I swear they should study her healing powers. There really was not much she could do with her dominant arm in a sling except remind me of everything I needed to remember (what was needed to be done vs. what could wait for her, where I needed to be and when, and help keep my husband as calm as possible."

She has voluntarily stayed overnight a few times so that I could get a decent night's sleep. I swear he knew she was here because he slept through those nights each time she stayed. She convinced my sister to take me out of the house for a day for a break. All caregivers should have the instincts this woman has. I do not go out any more than necessary because if I do, I find she has cleaned at least a couple rooms of the house... all with her left arm!

Other than doing a little of what Peg normally does, I have no clue why I have been so exhausted and weak. I started taking an iron supplement and extra B12 since both of those have tested low a few other times and it has seemed to increase my energy level a bit. As fate would have it though, once I started feeling a bit better, I came down with a cold. 

This made me face reality. My FTD continues to worsen. Somehow, I had convinced myself that I was staying at an even keel so that I could care for my husband with his Alzheimer's Disease. Wishful thinking, I realize that now. At the same time, his dementia is worsening. I am fortunate, that for the most part, he is still easy to get along with. Except for bathing of course. He still hates that. Afterward, he says he feels better, but he just can't make the connection that it is the bathing that makes him feel that way. I guess that connection in the brain no longer works. This is such a common thing with FTD and, I guess, with all dementias. As I wrote before, switching to "wet" sponge baths has helped immensely. He does not mind the water when it is done this way.

Peg is working with me to not jump as soon as he asks for something or looks like he wants something. Included in that is to not help him do things he is still capable of doing. For instance, it takes him a long time to dress himself and it usually isn't in the best of clothes (I think he believes holes makes everything more comfortable) but what does that matter. I do make sure to remove his dirty clothes from his room at night or he would wear the same thing for weeks, even the underwear. Yes, it is gross.

Until she pointed it out, I had not realized that I was doing nearly everything for him. It is sometimes difficult to watch because I know he is struggling, but she has me convinced that it is good for him to be able to do a few things himself. When I thought about how much I insist on remaining as independent as possible with my FTD, that totally makes sense to me now. Now, I often ask him to do really simple things... like opening a box or setting a dish in the sink. He now will, occasionally even take the plates out of the dishwasher when he see me start to empty it.

One thing that continues to amaze us is that he recognizes all of his medications. He takes 13 pills in the morning. None are for dementia, obviously. Most are for his heart and blood pressure, the rest are vitamins. If I have made an error filling his pill boxes, he catches it. I cannot even do that for my own, yet he can do it without fail. Because I struggle with it, we have switched pharmacies and will soon be using pill packs to eliminate me filling the pill boxes. I have confidence that he will still be checking them every day.

Caregiving can definitely be exhausting and leaves one with very little time to do the things that were enjoyed prior to becoming a caregiver. It is not at all an easy role to fulfill. Even raising children was easier. First of all, most of us were younger and still full of energy. We were mostly not stuck at home because it wasn't nearly as difficult to take them along with us. Plus, it was, for the most part, a role we had chosen. I stress here, as well, that all this is also true for those with FTD... it is definitely the most difficult task I have ever faced. Caring for my husband makes it worse, but it was extremely difficult on its own.

Caregiving, at least for me and for many caregivers I have spoken with, is easier when we remember the love we have always had for each other. I constantly remember to give my husband a kiss (It's usually on the top of his head or on his neck because I still cannot get him to regularly brush his teeth.) or just a loving touch a little rubbing on his arm or back. Romance is definitely out of the picture, at least for my situation, but love is always there. He will come to me and ask for a kiss or to hold him for a while. It's not always at a convenient time, but I make time. Of course, sometimes, he asks me if I am his wife first. I can live with that.