Being with someone with dementia
For all of you caring for a loved one who is slipping away. Be it human or other. You will only have understanding of what you saw and did, years later, but don't let that stop you from trying your best (according to you, not according to some made up societal standard). And later, if you can, be that person you wished for. Care for the caregiver.
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Feel free to reply to any comment by clicking the "Reply" button.It's actually not rare for a kid to be born with Dementia and then to develop autism later at all. I can see that you love him with all your heart and you wish to take good care of him. However, it might be time to get a caretaker. Your son is going to be a teenager soon, and it would the best if there's a person who specialized in dealing with this. It's totally okay that you are skeptical about this whole thing. I mean, a stranger who's supposed to look after your son all day? But you don't have to worry, since a caretaker's responsibility is to myhometouch.com, right?
mayaoung
Level 2
Oct 19, 2021
0
I'm getting to deal with both my mom and stepdad's losing battle with dementia. It's hard dealing with the bad decisions, forgotten dates, fixing thier financials on a quarterly basis, worrying about them hurting themselves (again), dreading every call from them or the doctors office, and putting our lives on hold to care for them (We bought a house last week in a different town, and can't relocate so there it's gonna sit for awhile).
But the worst part is eating with them. My stepdad can't eat a hamburger unless it's given to him complete. If its got the top bun off on the side so you can add condiments he doesn't realize it's a hamburger. We had corn on the cobb and hotdogs - he took the meat out of the bun, replaced it with the corn, added mustard and tried to eat it.
He knows somethings wrong but not what. He's confused, afraid, and can't be left alone even though he wants and needs time to himself. Moms refused help in his care ("because I don't trust someone else to treat him with the dignity I know he deserves" ) and both are suffering horribly from her decision. Real conversation I had with her:
"Mom, he's a 3 year old"
"No dear, he's more like a 4 year old. He can speak in whole sentences"
"Ok, 4 going on 3"
Moms been exhibiting symptoms of dementia at an alarming rate the last 6 months. We're hoping it's stress related due to the fact that an 86 year old 105 pound woman is caring for an 86 year old toddler 24/7.
But one last Xmas in thier house, then the proccess of getting them into a facility to care for him, and eventually her, begins (my stepdad has actually seen what moms been doing to both of them and is the one saying they need help and need to move. Finally).
What really, really blows is how fucked up this is making thier lives. Once vibrant, active, members of the community they don't recognize people when we're out. Social situations they used to love they avoid because they can no longer handle the stimulation of a different environment and don't like the fact they don't "know" anyone there, even though some if them they've dealt with for decades.
Fuck dementia.
1of5
Level 8
Dec 23, 2019
2
A lot of us have been there, and you are never alone. Take care of yourself first , you may need your strength. I watched my mother go, and in the end her brain lost it power to regulate her body temprature, so that she spent the last weeks of her life in bed taking the blanket off, saying I am hot, and then pulling it back again, saying I am cold, fifty times an hour. But at least in her case it was mercifully quick, just a year or so.
1of5:
@Fernapple thanks, I learned a lot with my first wife - she deteriorated mentally over nearly a decade from botched post op care from surgery. Learned who to take care of first to make sure everyone gets what they need the hard way.
We're on year 3 of him being really bad, but it's been a very slow decline for about 5 years previous. Much like slowely boiling a frog, mom's been adjusting without realizing how bad it is.
@1of5 Yes it must be very hard when it is very slow, mother only took about three years in all, though there were a few early signs. My wife died of cancer in my ealy forties, and fortunately that was also relatively quick, only three months, as did my father, so I will not have to face that with them. But I am sorry to say that my best friend and traveling companion, who is a lot older than me, shows signs that may be the beginings, hoping not, because she was such a vibrant person, it will seem doubly sad.
1of5:
@Fernapple its hard to watch. You feel guilty wanting it to end, knowing the only way it does. It sucks. Watching someone who was once extrodinary at many things struggle just to get through a meal, or shopping, or even making a shopping list can break your heart.
These were people that individually and as a couple were recognized on a national level as educators - they still are on Jimmy and Roslyn Carter's Xmas card list - and then went on to work for charities (mom) and as a public servant (stepdad served as a port commissioner and city councilman).
Fortunately if you get the right people/information it's not as bad as it was. Lots and lots of things have been learned and while no cure exists actual quality of life living with it has improved. It's more manageable but fuck, I still wouldn't even wish it on Trump.
Stupid nyt paywall. Yeah, wouldnt wish this on my worst enemy.
MarkiusMahamius
Level 7
Dec 23, 2019
0
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