In the past three or four days, I have had some pretty interesting conversations with some others with FTD. One was frustrated because her husband was assuming that since she has FTD, she can no longer do anything and certainly could not do anything right. She was feeling worthless. Another conversation was with a caregiver who blamed her loved one for everything that went wrong and she truly believed that every negative behavior was being done intentionally by him. Fortunately, I am also familiar with some care partners and their loved ones with FTD who do actually work together to make this journey through FTD as pleasant as it possibly can.
Once there was a bear who assumed that now that his loved one has been diagnosed with FTD, that they could no longer do anything. The bear took over everything in their lives. He cooked, he cleaned, he shopped, he did laundry, he insisted on going everywhere with his loved one and he made all the decisions. When the person with FTD tried to help, he criticized how it was done and told her not to do things anymore. He made all the decisions in their lives such as where to go and when. The bear's loved one was made to feel like she was totally worthless and there was nothing she could do correctly. She always felt that he was belittling her. It wasn't easy for the bear either. It did not take long until the bear was depressed, angry and totally worn out from doing everything himself. His own health declined as it became more difficult to do everything himself. He began lashing out at his loved one by yelling and criticizing her. This just made everything worse because the FTD'er also became depressed, angry and worthless. Life was not pleasant in this home.
In another part of town, there was a bear whose loved one was also diagnosed with FTD. This bear accepted the diagnosis but did not acknowledge the symptoms of FTD in their loved one nor accept how FTD had changed him. The bear became angry and resentful every time her FTD'er did not do things that he used to do on his own or didn't do something she had told him to do. This bear yelled often and was constantly criticized him. She believed that he was hiding things, like the remote control, on purpose just to get to her. She also got angry when the FTD'er got confused and did not understand what she was telling him to do. One day the bear discovered that the FTD'er was not paying the bills and was convinced he was forgetting just to irritate her. Both the bear and her loved one became so very frustrated and angry that they barely talked anymore. They were always fighting, it seemed. It did not take long until the loved one did not feel loved and lost interest in everything around him. Obviously, life was not pleasant in this bear's home either.
In yet another part of town, there was a bear who, when her loved one was diagnosed with FTD, she learned as much as she could about the disease. She researched on the internet and talked to others who either had the disease or was caring for someone who did. She even read a couple books about it and joined a support group. Learning what FTD was going to do her loved one was upsetting to her and she got angry at the disease quite often. The bear kept reminding herself to get mad at the disease and not the one with FTD. She did learn that the only way they were going to be able to cope was to talk about it with each other. This bear paid attention to when her loved one was more irritable and figured out that it was when he had done too much the day before. She realized that after stressful days, his FTD symptoms would appear worse. So she started scheduling less things on the same day. She encouraged him to do activities that he used to do or to learn something new. She figured out that if he could accomplish things, he would feel better about himself. She didn't yell at him very often because she learned it did no good. She would let the subject drop and then talk about it later when they were both calm. If he folded laundry, but it was done wrong, she thanked him for doing it without criticizing. Then later, when he was asleep or watching TV, the bear refolded it the way she wanted it. The bear and her loved one still did things together, they laughed when something went wrong because of his FTD. The bear understood that the FTD disease was causing him to act differently. This bear's home was still very pleasant to live in.
Okay, I have FTD and sometimes I come up with some weird ideas. I won't even start about the weird dreams.
There is no perfect way to deal with FTD in any relationship. There are no instruction manuals or experts who can tell you exactly how to deal with your FTD relationship. Some people can give you a lot of suggestions and ideas for what MIGHT work or what has worked for them. That is what I try to do. If I ever come across as though I know everything about FTD and dealing with it, that someone will set me straight.
No two cases of FTD are alike. The disease does not follow a pattern as to what order the brain cells are destroyed. That is why we often hear or see comments on the support groups about how their loved one is nothing like the person who has FTD is being described.
No two relationships are the same. If the relationship between the one with FTD and the caregiver was strained before FTD, it is bound to get even more strained with it as a factor. The same is true with financial situations. Finances are often a huge issue with FTD. Careers are ended much earlier than was planned. The difference between dollars from salaries and wages while working and the number of dollars from Social Security Disability or disability insurance can be a very wide gap. If the one with FTD was the major wage earner in the relationship, the strain can be overwhelming. Combine the reduced income with the increased expenses brought on by FTD, and it can be an overwhelming strain on any relationship.
People can have totally different personalities. My mom always said I had a "take charge personality" which I believe was her kind way of saying I was a pushy person who insisted on jumping in and taking over. This kind of person can be detrimental in a relationship with FTD involved because they will jump in and take over everything and try to do it all themselves. There are also people who don't want any changes to routine nor any added responsibilities. They are happy with how everything has always been and wish it to stay that way. Neither of these approaches is going to work well in a relationship that involves FTD.
Fortunately, there are others who work things out. Those who are fortunate enough to have others who are willing to pitch in and help obviously have an easier time. A lot of flexibility along with give and take is needed to maintain a decent relationship. I doubt there is any totally peaceful household that includes someone with FTD. It is a fickle disease and those of us with the disease can be different from day to day. I can be different from minute to minute.
I wish my story had another bear. This bear would be someone like my daughter. She takes things in stride fairly well. She will ask me if I need help with something and then back off if I say no. She realizes how stubborn I have always been and that it is often worse since FTD. She comes up with suggestions for things that I might enjoy doing that would be possible with FTD. She rarely criticizes me. She will tell me when I am wrong or over-reacting though. She is a perfect balance. Then again, it might help that she lives in a different state. We talk for about a half hour every day, but that is certainly not like living in the same household.
The fourth bear could also be my sister. She has learned enough about FTD and knows enough about the quirks in my personality, that she is really good for me. She takes me grocery shopping, but doesn't get angry or frustrated with me when I do things like tell her to keep up with me and don't try to evaluate if I might like a different product after I have made my selection. She has learned that when I snap out, it is the disease causing me to do it. She knows when to step in and when to back off. She and her husband do a lot for me. Not everyone with FTD is lucky enough to have someone like them.
Dealing with FTD requires the patience of a saint and the ability to let things slide as well as knowing when to argue and when to give in. It is a difficult disease to deal with, no doubt about that. It is certainly no fairy tale.
I wish I could say that my husband and I are like the bears in the third story where everything seems wonderful. My husband is not the best caregiver, but he also has Alzheimer's Disease now, so he is not capable of being the best. His disease also makes me a caregiver and, with FTD, I am not even close to being the best caregiver. The one thing we always do though, is end each day with a huge hug and a couple kisses thrown in. It really helps to erase the conflicts that occur each day.
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