Tag: dementia

A Belated Update. Valerie – 1969-2024

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It was about a month ago I realized I had forgotten to update this site. Valerie (ToughGalVal) succumbed to her frontotemporal dementia (FTD; Pick’s disease) and passed away on November, 12, 2024. I and a few family members were there in the room with her when she passed. Since her seizure in August, her mobility took a nose-dive and her appetite disappeared. (or ability to eat). By late October, she had lost weight and was in bed. I think October 5 was the last time we visited her while she was in a wheelchair. We still visited weekly, but the situation was clear. – she wasn’t going to last much longer.

The last two days of her life were something to behold. I consider myself fortunate to have been there and to hold her hand and to be with family for the moment. The past several years seem like a decades long event, rather than just a few years. Valerie first showed signs of her disease in late 2018. So, six years was the duration., which is, I think, common for FTD. We were fortunate to be able to provide Valerie with the care she needed at the different times. I can only imagine how those without resources manage.

Before Valerie passed away, I had never been in a room with someone who was dying. To see her pass was something that did help bring a little closure. But she was so young so there is of course a lot of emotions about seeing someone who was so vital be taken down relatively quick by this brain disease. Dementia is awful for those who have it, and for those around that person. There can be no reasonable conversation between the sufferer and their family. Nobody can say what the journey is for the dementia patient – what are they seeing, what are they hearing? But we can say to some degree what it’s like for the family and friends. It’s not pleasant, to say the least. Valerie was tough. Caregivers are tough, too. I may post again here or I may not. I am not sure what I will do with ToughGalVal’s story, through my eyes or my experience. It will probably be years for me to process. But now, I have memories of Valerie and time with her family, still.

Welcome to Frontotemporal Dementia, Stay awhile, you might learn something.

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This post is meant to sort out this WordPress theme I am using and to figure out pages and posts. But I won’t leave you hanging. My sister has advanced dementia and in the 3 months we’ve been caregiving for her, we’ve learned a few things.

Ombudsman – whatever county you live in, search that county with the word ‘ombudsman’ and you will be directed to a volunteer organization that provides great information related to dementia and facilities (nursing homes, memory care, residential board & care) – they should know everything there is to know. And they can point you to other resources when it comes to other issues, such as medical insurance, financial assistance, in-home care. Remember it: OMBUDSMAN. I had never heard of this group until March 2022. I have called them multiple times since then and they have always been patient and helpful.

Memory Care facilities: They do not take most insurances. Possibly long term care insurance but you would have to purchase this years before your diagnosis, so good luck. Most memory care facilities are going to be private pay and can be anywhere from $3k a month and up, depending upon where you live. In California, $5k and up. So if you plan on getting dementia, get rich first.

Project Lifesaver: again, I had never heard of this organization because I had no need to hear of it. Project Lifesaver provides tracking devices so that your local sheriffs office and utilize their resources and find your loved ones quickly should they wander off. There is a monthly fee, but it’s worth. The radio technology is better than ‘off the shelf’ type of trackers like Tile. It’s something to have that hopefully you never need to use. My sister has a project lifesaver bracelet and guess what? She tries to remove it, as some will often do. You don’t want to lose these devices. I just tell her to leave it alone on her arm, that it’s for her safety. He daughter decorated the bracelet, which is by itself pretty bland/ugly, but the bedazzled look only lasted about a month. I am not sure this service is available in every city/county in the U.S..