Sunday, January 26, 2020

Once More: One Thing At A Time

I think we all have them and sometimes I wonder if they are contagious. They certainly snowball, rolling fast enough that there is no way to catch up to them. Many times, you chase them long and hard enough that you are exhausted for days afterward.

What am I talking about? Those days.... the days when everything goes wrong and the problems just keep getting worse or more difficult to fix or both. I can give you an example and how the day tried to destroy me.

Monday morning on Martin Luther King day, I never had a chance to reflect on this saint of a man. I woke up that morning at 8 a.m. which is actually, yes I admit it, early for me. My helper/care partner was not even at the house yet. Upon awakening, I did my usual morning activity of going to the bathroom (of course) and brushing my teeth. Unfortunately, the toilet and sink faucet both sputtered a few seconds and then... nothing. I grabbed a couple bottles of water and finished up.

Next step was calling a neighbor to see if the problem was isolated to me. No one was home, no one!  While continuously telling myself to calm down, that I could handle it, I started calling the water authority. No answer. The water emergency number. No answer. The fire department non emergency number. No answer. The police non-emergency number. At least they allowed me to leave a message but they never did call me back.

Wait, let me set the proper tone here. We had an ice storm the day before and there was an inch of solid ice covering everything. The night before, when I was preheating the oven, I heard horrible popping and sizzling noises. I ran over and shut the stove completely off and then grabbed the fire extinguisher which, thankfully, I did not need. Chalk one up for me. Of course I had to wait until the next day to call.  

Finally, I calmed down enough to venture downstairs to see if something was leaking. As soon as I hit the bottom step, I could hear a river roaring through the garage. One of the water softener canisters had exploded. Fortunately the floor drain was keeping up with the river. (But can you imagine next month's water bill?)

I was so proud of myself, I remember what lever to push down to shut the water off just before the softener. Long story short (I guess it's too late for that.)  Someone came out from the softener company and bypassed the softener so we could have water. With the ice storm they had no repair people available until late the next day. Yep, I need to buy a new water softener. Mind you, I plan on selling and moving within the next few months. I could not leave it on bypass if I did want to sell. Plus our water is horrid without one. It will be installed this week.

Our wonderful appliance repairman called and, after standing on my head, I was able to give him the model number so he could order the part and he scheduled to come install it two days later.

The day after all this, I managed to fix my missing internet connection all by myself. Don't ask what I did, I just kept trying things one at a time, but undoing what I did when it didn't work. That was a successful one thing at a time. I was kind of proud of myself until I realized it was just trial and error.

As I write this, a full week after the ice storm, the drive is still thick with ice but I am relying on the sun to melt it, I spread just five pounds of salt on the edge of the drive so we could at least have a path to the mailbox. My father is probably still cringing in his grave. You NEVER put salt on the drive!  Yes, Dad, I know.

My stove is working again. Dang... I have to cook. Actually . I am very thankful I remembered my One Pot so after the first night, I could cook. Pretty good thinking, if I have to say. All I have to do for the water softener is to write a painfully large check when the installers show up. I wish I could skip that "one thing".

If you have been reading my blogs for a while now, I am sure you are familiar with my mantra of "One thing at a time!"  When I started to feel overwhelmed, I kept saying that over and over. It worked. I could not make repairs myself like I would have pre-FTD, but I got it done. I must also add that the husband of one of our FTD'ers (they live 4 hours away) offered to drive up and help out. My FTD friends are probably the best, at least truest, friends I have ever had in my life.

Now that you are bored or thinking, "There she goes again, making something out to be much worse than it was", I will admit that pre-FTD, I would have handled it all without the blink of an eye. I would not have become frantic at all. It would have been just another day, except maybe an excuse to take a day off from work!

That is the thing about FTD which many caregivers cannot seem to understand. We are only capable of doing one thing at a time. For instance, trying to cook the next night... I had to remember I even had a One Pot and then where the heck it was. Then I had to realize I should rummage through the freezer for things I could put in the pot.  Then I had to go to the pantry to find something to make it saucy. Working the pot was trial and error. I somehow had it on pressure cook not intending to. When I tried to correct that, I had it turned off. I had to figure out how long to cook it. The instruction book did not specify how long to cook frozen meatballs, a packet of dry onion soup mix and a quart of beef broth and a few noodles thrown in. Eh, I did it though and didn't give up. We had a decent dinner as a bonus. All in all, it was probably at least 10 separate things I had to focus on to get that simple meal ready for the table.

Those without FTD, no matter how often we say that it doesn't work to give broad instructions. They still insist on saying things like, "wash your hands and then put the milk on the table." Each of those involves several activities. Going to the sink, turning on the water, finding the soap if we even remember we need soap and then drying the hands. By then we have probably forgotten what we were going to do next and will go sit down in our comfort chair. 

I will go as far as saying that I see this as almost a form of abuse. If the care partner knows we can only do one thing at a time and it needs to be in small of steps, why do they do it? What happens is the one with FTD becomes very frustrated because they know there is something they are supposed to do but don't want to ask because they are afraid they will be yelled at. The care partner is probably tired and when they see the milk is still in the refrigerator, they may even yell, "Where's the milk I asked you to put on the table?" and worse, "Can't you do anything right?"

The answer to that last question is "No, I can't." Honestly, we can't and we know we can't. It is not that we don't want to or that we are lazy or don't care. We just can't. Another part of this is that the FTDer probably already feels worthless and does not need that reinforced.

It takes at least two to make things work. Both parties must remember "one thing at a time." That goes for the care partners when they are faced with overwhelming tasks. When I was caring for my husband (who died in Nov. of Alz.), I kept a list of things I needed to. I would look at that list several (probably more) times a day to determine what was the most important to do. Then, if the important ones were done, I would only work on the others as I had the energy.  Like everyone with FTD, I only have a limited amount of energy. If I go beyond that limit, I am unable to do much at all for a couple days at the minimum. 

I greatly admire the FTD spouses out there who have to juggle, caring for their loved one, working at a job, household chores and raising children. I don't know how they do it.  I do have help in my home a few days and nights. I first hired her so she could be here when I needed to those needed things like grocery shopping. She started staying nights to help with the nighttime situations toward the end of my husband's life so I could sleep. Her main responsibilities are to calm me down when I need to, to focus me back on what I was doing when I get distracted and keep track of my schedule. She does do some light housework as well. Without her, I would most likely be in assisted living. I guess she is my equivalent of an FTD spouse. Thankfully, she has enough patience and stubbornness when each is needed.

I know I have written on this subject a few times, at least, previously. It is so important, though, I think it bears repeating for those who have not been reading my blogs for long. It also is something we often forget. I know I did when I was caring for my husband. When you are exhausted beyond belief, it is difficult to immediately think to give them only a small thing at a time to focus on.

Without "One Thing At A Time", it would have gotten very ugly here on Monday. I was still incredibly exhausted but I did it. I was also proud that I did.

Saturday, January 11, 2020

We Are Not Children

I don't often have difficulty coming up with subjects to focus my blog on each week. Ideas pop up all the time in my life and in others relaying frustrations or questions and observations. Today, in one of the online support groups, a person with FTD asked about caregivers and others treating those of us with FTD as though we are children.

This has been one of my pet peeves since being diagnosed. I often get frustrated enough to say, "I do have dementia, I do not have stupid!" Most of the time the other person does not grasp what I am saying but I'm pretty darned sure they get the message from the tone of my voice.

When I replied to the gentleman's question this morning about family members, caregivers and others treating someone with FTD as though they were a child, it hit home.

I answered his question that he was certainly not alone in this frustration as did many others with FTD. I also told about how I sometimes judge people by whether they treat me like a child or the intelligent person I still am.  If I am meeting with someone I have not met before' yet considering doing business with them, I use this as a litmus test. I tell them that I have FTD, a rare disease that causes dementia. I watch their face, especially their eyes, to see what changes come across them.  The reactions vary.

Many times, just by watching their face while I tell them, I can immediately tell whether this bothers them or not.  The next part of my test is whether they start speaking to me differently than before I mentioned the "D" word. Unfortunately, quite often, their reaction changes their entire demeanor. This is when they start speaking me like you would a child.

How do they act differently? The start speaking more slowly and, for some reason, louder. I have not heard of very many cases of dementia  causing deafness, yet they do. They start using smaller words or defining words to me as though I could not possibly understand what they are saying.  Or, if there is someone with me, they will start addressing them instead. It could be comical if it didn't anger me so much. These are people I do not do business with. I have walked out on a financial advisor, a social worker and sales people.

One of the most interesting things, at least to me, about those with FTD is that a majority of them are above average intelligence. Many have held high-power jobs and highly responsible positions. We do not all of a sudden lose that intelligence with FTD. We may struggle for words or ask someone to repeat what they are saying. I swear sometimes if I just blink, I miss the entire sentence someone is saying. I find this is because I can not instantly jump back into what is being said after being distracted, not that I am stupid. It is simply having a shorter attention span than I used to have. 

Are those with FTD like children?  I say "Hell, no!"  We may exhibit some childish behaviors but that does not automatically reduce us to the level of a child. What am I calling childish behaviors? Having no filter between brain and mouth. We think it, we say it. Also, we often display dis-inhibition. Just as a child may walk into a room in their underwear, someone with FTD may not stop to realize they are not dressed appropriately for company.

Sometimes, it will seem as though we experience meltdowns and appear to be throwing temper tantrums. Maybe some do, but the majority of us do this when we are totally frustrated. It can be from not being able to do something we used to, being criticized or made to feel inferior/worthless or not being able to express what we want to say. 

When the person has Aphasia, many seem to dismiss their value. It is as though they think if you can't talk, think of words or use incorrect words, that you can't think either. 

I clearly remembering a time when a caregiver for someone else said, while dressing the one with dementia, "Oh, isn't she just so cute? It's just like dressing a doll." Excuse me? She is not a doll. She has a brain, has preferences and feelings.

One thing I beg of caregivers and medical providers. Please remember that we can still hear, understand and think. When we are talked down to, it is demeaning and defeating. In my case, you would be taking cover because I would start lecturing quite loudly. When my daughter was quite young and she was waiting and being ignored, she would say "I'm still here!" That is the way I feel when someone is speaking to my caregiver or family member instead of talking directly to me. Before my husband succumbed to Alzheimer's Disease, when home care workers would start talking to me, usually over his bed, I would say that he could probably answer that better than I could.

Give us that chance to speak or the time we need to gather our thoughts. Then, if we still cannot express ourselves, that is when someone else may jump in with prompts or help with words. I acknowledge that we sometimes act childlike but that does not require anyone to respond as though we are children.

Again, I will use an example of my daughter. I never spoke "baby talk" to her, at least not after she was a month or so old. She may have been doing childish things, which was really her job, but I did not respond childishly. I spoke to her all the time. If I was making a bed, I would talk about making a bed. That could explain why her first words were "kitty cat" and "Daddy go to work?" Now, during the teenage years, I will admit to responding to her in kind which led to a lot of screaming matches until I realized that was just making things worse. Once I stopped screaming, so did she. 

Like with my daughter, perhaps if you respond to the FTD'er calmly and softly, they just might calm down. If nothing else, it will ease the strain on your vocal cords. I realize it may not always work, you may have to try redirection or distraction, but my days and nights were much nicer when I was speaking calmly to my husband, not adding to his frustration or causing a meltdown. I can also honestly say that I never treated him like a child, not once, even when he was doing childlike things. 

Sunday, January 5, 2020

I Am Back

When I logged on this afternoon to attempt to write, I was shocked that it had already been 3 months since I have posted. In addition to that, the 3 months before that were pretty sporadic. Somehow, it made me feel extremely tired.

The last 6 months, especially the last 3 have been a challenge. I hope I met that challenge well. I certainly hit it head on. I do believe the last 6 months have aged me about 3 years. I see it every time I look in the mirror.

If you are new to my blogs, I should explain that after my being diagnosed in 2011 with FTD, my husband was diagnosed about 3 years ago with dementia, most likely Alzheimer's. I had promised him that, as long as it was at all possible, I would keep him at home and care for him. Proud to say, I kept that promise. Mike died on November 18, 2019, right here at home. I did allow I friend to help out on a part time basis to help me and relied on my sister to help as well. Since I needed help as well due to FTD, it was the only way I could do it.

I am not going to pretend it was all smooth sailing. It wasn't. 

If you do much reading on the blogs and support groups devoted to FTD, you will think like I did. Hospice and palliative care is out there and you just have to ask for it. It sounded too good to be true and it was. When I was finally feeling that I could not do it without more help, I took him to our doctor.  She kindly made a request for a hospice evaluation. They responded on a timely basis, but he was not accepted into the program.

Medicare controls the hospice regulations and they have become stricter as of late. Their medical director must be able to, without doubt, believe the patient will not live beyond six months. Unfortunately, just as FTD patients can, Alzheimer's patients can also put on the charm when strangers are around. He not only cooperated, he joked and flirted with the hospice personnel. There are a couple private hospice companies in the area and I was told they might accept him, but I had not heard the best things about them. Also, would I really want him to have care from someone who was willing to skirt the rules?

I asked about palliative care. I had been reading so much about that on the FTD support groups. They looked at me as though I had horns. They "explained" to me that palliative care is what the hospice provides, keeping the patient comfortable through to the end. When I explained what I had been told and what I had been reading, it was two separate things and asked where I could get palliative care. They did not know, but did contact our doctor and suggested she request home nursing to come out. They did and provided a physical therapist, an occupational therapist and a home health aide 2-3 times a week.  This did not accomplish much except entertaining him but he did allow the aide to shower him, something he never allowed me to do, only sponge bathes.

After 3 weeks, home nursing called our doctor and suggested a second evaluation by hospice. We were fortunate that the same nurse practitioner came for that visit. She was taken aback by how much he had deteriorated in that time. For instance, his calf measurement was 3 centimeters smaller. They immediately accepted him this time.

They came armed with equipment, an air mattress (I had already obtained a donated hospital bed) to prevent bed sores and for more comfort as well as every supply I could imagine, even his Boost nutritional supplements and adult briefs. BUT, they only could come three times a week and would only be there for less than 2 hours. I also could not leave during that time. 

By this time, I was beyond exhausted. I am not sure what you would label that as, but whatever it is, that was me! My friend who had been helping us out for the past year started spending more time and would alternate night duties because he did not sleep more than an hour at a time. I don't know if I could have kept him at home if I did not have her help.

After just 3 weeks, he was put on daily visits. That was a Godsend, mainly for the health aide coming every day. She would shower or give him a good sponge bath, help me change his bed and help me coax him to eat or drink. After just one week of this, I started sleeping on the floor next to his bed. The hospital bed I had been given came with a mattress and since his bed now had that wonderful air mattress, I put the original one on the floor and that is where I slept, always holding his hand or arm.

He slept a lot better because when he would get restless, I would assure him I was right there. My daughter came home and spent a few days with him during this time but finally returned home because she firmly believed he was hanging on so she would not see him die. The second night she was gone, I became very uncomfortable lying on the floor, got up and went into my room to lie down for a short bit. This is when he chose to leave us.

I so regret leaving the room. After I was out of his room for about 15 minutes, my helper/friend went in to check on him and realized he was dying. She waited until she was sure he was gone, then came and woke me. Even though I know he chose to not give up while I was with me, that haunts me. I cannot understand why she waited, but I have forgiven her. 

I immediately called hospice and they were there within 30 minutes to declare him dead. (It was about  a.m.) That was the last time I saw or heard from anyone from hospice. Something that brought me great peace was that, while we were waiting for the nurse to arrive, I gave him one last sponge bath. His final two days, he was feverish and perspiring heavy. Being able to do that, just the two of us in that room, is now a fond memory.

I am guessing that in more populated areas than this one have more options for palliative/hospice care, but all those things the "experts" claimed could be provided for us just were not available.  Don't get me wrong, I would recommend them to anyone and everyone, they were wonderful. I was just disappointed that everything I had heard about available care just did not exist.

So, it has been two months since his death occurred. Christmas holidays were difficult yet, in other ways, very special for my daughter and me. 

How did I do it? How did I manage to care for him at home? It was not always easy. In fact, some days were downright difficult. How I got through it was by relying on my common sense. I have no medical training but I have a lot of common sense. If he was fussing or trying to get out of bed, I would assess what was going on and come up with ways to keep him comfortable. I wrapped sheets of dense foam around the bed rails so he would stop getting his feet stuck and injuring himself. If he didn't want to eat, I did not force him. I would encourage him and make things like a Boost milkshake that he would most often drink. I constantly encouraged liquids. I sang to him. Now with that, I pity him because since FTD, I cannot carry a tune at all. He was not a practicing Christian, but I would pray with him. That seemed to soothe him. I talked to him nearly all the time. I read to him... chapters of the book he wrote and had published about his brother and growing up in simpler times.

Above all, I kept assuring myself that it was okay if I was not perfect. If I judged incorrectly and did something wrong, I kept telling myself that the worst day at home with me making a mistake or two was better than any day in the nursing home. There was no way this man was going to die alone.

As I said it aged me. When I look in the mirror I am shocked some days. Where did those wrinkles come from anyway? I am sure it shortened the time I have left because I sure didn't take care of myself as well as I should have. But, hey, I have FTD and it's going to kill me. What better way to spend a couple years of it. After 47 years of marriage, I was willing to push myself as far as I could to care for him.

That is our story. That is why I have not had the energy or time to blog for 3 months. I am back though and my New Year's resolution was to get back into writing my blog, helping others with FTD and shouting out to the world about this horrid disease. Thank you for your patience and for all the encouraging email. I love all of you.