Maki, my heart goes out to you. My husband’s mother had very similar problems the last two years she was alive. He had help from his sister and a cousin with taking care of his mother. I know how exhausting it must be to care for your mom by yourself. Being the caregiver of someone needing 24-hour care and supervision takes a huge toll on your entire being. I suspect your art has been one of your saving graces. I admire you for all you do. Please take care of your needs as much as you can. Your art is amazing. Thank you for sharing it and your struggles with us. Big hugs to you.
Hello Maki, thank you for sharing your experience with your mother and your struggles. My prayers go out to you, your mother and your family through this rough time. I now have a much deeper appreciation for the art that you have produced and shown recently knowing what else you have been dealing with behind the scenes. Hope all goes well for you and you mother.
Hello Sonia, thank you for your very kind words. How important it is to get enough rest under these circumstances is something I had to learn with a terrible incident. Two years ago, when I was just a beginner caregiver for my mother, I had a problem with my heart due to too much stress and lack of sleep probably, and had to call an ambulance for myself. After a series of thorough medical tests, I was diagnosed with NOTHING! But I decided not to sacrifice my own rest any more. Specifically I decided to take 7 hours sleep every day, no matter what. And I’ve been strictly adhering to my own rule since. Without this practice, I could not have survived these couple of years. But a longer sleep is not a perfect solution to the exhaustion of a 24/7 caregiver I’m afraid. Phew!
Hi Maki. My heart goes out to you and your mother. As I have become involved in the community here these last several months, I have found that many members here have immense struggles we are faced with that most people would not have a clue about. I am walking down the same road as you when it comes to dealing with a family member with dementia, but in my case it is my sister who has early onset Alzheimer’s disease and also has down syndrome (which I think you knew about from my artwork). My sister has had a public guardian since she was 2 years old. Since I’m just 5 years older than her, most of the decisions in her early life were beyond my realm of understanding and/or control. It was two years ago that she was assigned a new public guardian and was living in a new group home too where I had several concerns about her physical health and overall well-being. I drove the 2 hours to see her every week and documented my findings. I hired an attorney that specialized in guardianships of the mentally disabled, and after a year I was in court where the public guardianship was terminated, and I was assigned as my sister’s new guardian. I’ve relocated my sister closer to where I live and in the last year have had to establish an entirely new team of doctors and support people to take care of her. The only reason I can do this is that I’m retired, have a very supportive husband, and do not have Anne living with me 24/7. That is where what you face becomes so monumental. Your mother is so very lucky to have you. All the best to you both as your journey continues.
When my daughter turned 18 she was legally an adult. We, her biological parents had to also hire a lawyer to become her legal guardians. By law we had to ask her permission to make any minor medical decision or daily living decision for that matter. Guardianship is renewed every year. Considering the kind of disability an individual has, or acquires at some point in life hence the renewal. Of course Down Syndrome never goes away regardless of the level of functionality of an individual. So it’s been an eye opening experience facing our child’s adulthood. That is just the tip of the iceberg. Not necessarily a bad thing as we strive to respect her independence and growth as a person, we respect and take into consideration her wants and needs. She reminds us that she wants to be well off on her own, have a husband and live in her own house especially because mom will be dead at some point and she won’t see mom anymore
Living away from legal guardians is not a bad thing either. It’s facing the fact that people with different abilities get bored and tired of same ol’ people every day. Blessings all around to all! @Maki@robichon
Hi Brenda, thank you so much for your very thoughtful words. Thank you also for sharing what your husband experienced. It is great that he was able to share his caring missions with his sister and a cousin. I too actually have a little sister, but she is another source of stress in my case, contrary to your husband’s case.
My little sister lives and works in Tokyo and she’s visiting where I and my mother lives, approx. 1.5 hrs flight from Tokyo, every month for the recent one year or so. But basically she does not do anything while she stays at our home for a few days. More precisely, she does nothing but to increase my stress whenever she comes.
When she first came, she blocked my path with her legs stretched, sitting on a sofa, looking at her smartphone while I was being extremely busy serving mother dinner. Next time she came, she got tipsy, staggered around when mom was brushing her teeth and bumped against her, knowing that mom has osteoporosis and must make every effort possible to avoid a falling. I was beside her then so she did not fall, but I still remember the fury and disgust I had that time. Last month, I asked her to stay at home watching over mother because I had to go out for a briefing with a person who would display my drawings for the show. She got upset and cut me off mid-sentence, saying “how many hours!?”. Occasionally, changing mom’s diapers does not go smoothly due to a variety of reasons, but my sister can totally ignore my struggles, being on her smartphone upstairs while hearing what is going on downstairs because I always speak in a loud voice to communicate with mother. While she’s back to Tokyo, I sometimes have to share some medical/care-related information with her via email, and she often runs down people who are supporting mom over here in her replies, although she’s never met them.
Well, it is hard to define “a normal person”, but I have to say my little sister is not normal. At least in my understanding, a normal person would offer a helping hand in this situation before being asked to do so. A normal person would appreciate the people who support their mother instead of speaking ill of them.
When it comes to the workload alone, that she does not do anything is not such a big problem because I can rely on the third-party professionals. But that I have to cope with my own sister who totally lacks imagination, empathy, understanding, in addition to all the stress of a 24/7 caregiver, really wears me down because it is so gross.
Based on these experiences, I’ve decided to exclude her from mom’s support team; i.e. I will not communicate with my little sister about mom unless really necessary. I cannot help it to protect my own mental health.
This is why I feel I cannot thank you enough for you guys’ humaneness. When I joined here four years ago, I did not expect that I could share my very personal struggles with you. Glad that I stayed here for these years, and thank you again for your very considerate words!
Hello Terri, thank you for your very kind words. Yes, I’ve been feeling the same way since you first shared your artwork in the critique and the members who could relate started to open their mouths to share their own experiences. It is like a peer support group of patients and their family. Thank you for saying that mom is lucky to have me close to her. But I am very aware that I am not a professional caregiver and her conditions are getting beyond the range where I can be responsible for. I’ve also been very concerned about the long-expected quakes and tsunami around this area. If they actually happen, there is no way that we can survive them given the location and the quality of the house we live in. But the nursing home which the care manager recommends currently is pretty new, sturdy, a big hospital attached, and located at the highest area in this town. If she can live there, the situation becomes much better because the safe facility and the staff members will save her and I can save myself if I don’t need to take mom with me.
I just hope everything will settle down nicely soon. Thank you again for your thoughtfulness.
Hi Maki - Thanks for being so real. It was my brother who was my problem while my parents were still living. But that story is just too long. Once again, I totally get how a sibling can make a difficult situation so much worse. Hang in there. Your friend,
Terri Robichon
Hi Sonia, In the state where I live, the guardianship continues unless it is taken away for some reason. However I do have reports to file with the court every year. My first anniversary is coming up in just a couple of weeks, so something new I still have to learn how to do.
I remember the point in time when my sister was living in an apartment with one roommate that also had Down Syndrome. They had counselors that watched over them but did not stay with them around the clock. Fears of my sister getting pregnant were one of many concerns that my parents had (but it was not their decision since they were not the guardians). Looking back, I still think that situation was not great. My sister was higher functioning than many, but living alone is a big deal when it comes to physical safety and having the mental ability to do things in everyday life that many of us take for granted. You continue to be in my thoughts as you care for your daughter, family and yourself.
Terri
Hi Maki - You have a lot of balls to juggle, and concerns for the weather must feel like the straw that broke the camels back. You have a great head on your shoulders and are making some difficult but important decisions. Hang in there. I will continue to be thinking about you and your safety.
Terri Robichon
Wow! You really have been under a lot of stress. I do understand how difficult that must have been for you. I went through a similar situation with my parents back in 2019, they have both passed away, but their last years were very difficult. Mt father had Alzheimer’s which made him difficult to understand at times and my mother had dementia.
My sister separated them for a while which was very difficult to see but at that time I had no way to help them as I felt they deserved due to my own situation with Lyme
I would imagine the adrenaline from preparing for the shows and caring for your mother gave you a burst of energy so I hope that you will get a little rest after all to take care of yourself.
I am so glad for you and your mother that you were able to take care of her and what she needs mostly.
Maki, I’m sorry your sister is no help and even a hindrance at times. My husband’s brother provided all the drama during the 24/7 caretaking and long after their mother passed away. It took years to settle the estate. My husband had to have back surgery after his mother died. It was such a stressful time for both of us. I thought he would never get well. They had to clear up an infection in his spine before they could even think about doing the surgery.
So many stories. But for now, please take care of yourself and provide the care your mother needs. Your sister will be left with regrets, but you will know you’ve done everything humanly possible for your mother.
