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Posted on 3/29/24 at 12:37 pm to Pisco
(no message)
This post was edited on 4/30/24 at 11:01 pm
Posted on 3/29/24 at 12:40 pm to kimmieb
Both my parent got and died from it.. my mil has it now and has no idea who we are..
It is sad and no solutions.. you just have to live and help with it…doctors can give some medicine to slow it down ( I think you are past that)… some medicine to “calm” them down.. it gets worse’s in evening.. they call that sundowner
But look at ss benefits / medicare etc .. will not help with aging but may be some loopholes because medical..
Fortunately my mil has money and is in an excellent place in Nola… my parents were a little different.. we found a modest place for them… my dad was retired military.. did either of your parents serve.. if so they may qualify for va services which was ok and where both of my parents ended up together in the same room in the dementia ( lock down )wing..
Be careful of paid help .. you can find adult sitters.. some good but I saw a lot of people try to take advantage of elders with mental issues and any money or things around that would not be missed.. would disappear or get them into deals like contracts for services.. live in maids etc…you will have to be very proactive in helping and protecting them.. when they call you a name you have no idea of who that is and take a swing at you… just remember this is not them and roll with the punches and remember who they use to be..
Some if my friends had them move in with them.. get a sitter for when they were at work.. and just struggle through it with them.. as op said there will be support groups and social service organizations in the area your at.. reach out..
Take care:(
It is sad and no solutions.. you just have to live and help with it…doctors can give some medicine to slow it down ( I think you are past that)… some medicine to “calm” them down.. it gets worse’s in evening.. they call that sundowner
But look at ss benefits / medicare etc .. will not help with aging but may be some loopholes because medical..
Fortunately my mil has money and is in an excellent place in Nola… my parents were a little different.. we found a modest place for them… my dad was retired military.. did either of your parents serve.. if so they may qualify for va services which was ok and where both of my parents ended up together in the same room in the dementia ( lock down )wing..
Be careful of paid help .. you can find adult sitters.. some good but I saw a lot of people try to take advantage of elders with mental issues and any money or things around that would not be missed.. would disappear or get them into deals like contracts for services.. live in maids etc…you will have to be very proactive in helping and protecting them.. when they call you a name you have no idea of who that is and take a swing at you… just remember this is not them and roll with the punches and remember who they use to be..
Some if my friends had them move in with them.. get a sitter for when they were at work.. and just struggle through it with them.. as op said there will be support groups and social service organizations in the area your at.. reach out..
Take care:(
Posted on 3/29/24 at 12:43 pm to Pisco
This is a very difficult situation. It's hard to deal with without having some sort of professional care in or out of the home. Do look at the sources folks have suggested. It may be that if she has Medicare she could go to a facility with a memory care section.
Be mindful of her not being clean or changing the Depends. She can get the dreadful UTI which can cause all manner of issues in older folks. It can contribute more the memory issues as well. She may need to be checked for that if things are getting worse and she's not cooperating with staying clean. I would suggest consulting her doctor about testing as well as the entire situation.
I'm sorry she and your family are going through this. It's extremely hard.
As others have suggested, she may be entitled to some home health care that would be covered.
My Mom has a few minor memory issues, but just short term and there are no issues with cleaning or anything like that. It's very minor. Due to mobility issues, we have live in sitters.
Be mindful of her not being clean or changing the Depends. She can get the dreadful UTI which can cause all manner of issues in older folks. It can contribute more the memory issues as well. She may need to be checked for that if things are getting worse and she's not cooperating with staying clean. I would suggest consulting her doctor about testing as well as the entire situation.
I'm sorry she and your family are going through this. It's extremely hard.
As others have suggested, she may be entitled to some home health care that would be covered.
My Mom has a few minor memory issues, but just short term and there are no issues with cleaning or anything like that. It's very minor. Due to mobility issues, we have live in sitters.
Posted on 3/29/24 at 1:20 pm to Gris Gris
Check into long term hospice. Different than short term drug them till their dead hospice.
My mother is in the early stages of dementia and also has Leukodystrophy in her mid 60's.
My father and sister are able to care for her but dad still works full time and it takes a toll on him. She has the option to go into long term hospice which would provide an aid visit 5 days a week, and would get most of her med supplies for free instead of having to pay.
My father has been hesitant to do it because once your on it, you essentially give up the ability to visit doctors in hopes of a cure. Of course, both diseases have no known cure. I continue to pray dad decides to place her there just so he can get some help.
My mother is in the early stages of dementia and also has Leukodystrophy in her mid 60's.
My father and sister are able to care for her but dad still works full time and it takes a toll on him. She has the option to go into long term hospice which would provide an aid visit 5 days a week, and would get most of her med supplies for free instead of having to pay.
My father has been hesitant to do it because once your on it, you essentially give up the ability to visit doctors in hopes of a cure. Of course, both diseases have no known cure. I continue to pray dad decides to place her there just so he can get some help.
Posted on 3/29/24 at 1:25 pm to beebefootballfan
Been there, and watching a parent or other loved one suffer from dementia is an awful thing. I took care of my mom for several years, though thankfully, her dementia progressed very slowly, until she had a fall.
As others have said, check with local resources for any qualifying help. Understand that she may react poorly to new people coming into her world. Change is difficult for them.
It's rough on them, and very rough on those taking care of them. Try to keep her on a schedule, and try not to take anything personally. Prayers sent in your direction.
As others have said, check with local resources for any qualifying help. Understand that she may react poorly to new people coming into her world. Change is difficult for them.
It's rough on them, and very rough on those taking care of them. Try to keep her on a schedule, and try not to take anything personally. Prayers sent in your direction.
Posted on 3/29/24 at 1:31 pm to Pisco
Nobody wants to put their loved one in a nursing home but it was the best thing for my mom. She gets better care and more social interaction than we could provide and it has improved my dad's life immensely too. He was ruining his own health trying to take care of her.
Posted on 3/29/24 at 1:48 pm to Pisco
I feel ya brother. We are dealing with the same thing with my mom. Not much advice I can give.
She was diagnosed with Parkinson's and moved in with us (I'm an only child, and she was widowed when I was 18) about 7 years ago. The first few years weren't too bad, but in 2022 she fell and broke her knee cap, then had an aortic valve replaced in 2023. Two days after this past Christmas she was in the hospital for a week with a UTI that went septic and pneumonia, and then was back in the hospital last week with another UTI and anemia. Like your mom, she doesn't want to bathe, forgets to change her Depends (even when we tell her and lay them out for her), rarely washes her hands and never brushes her teeth.
We have a 2 year old and a 2 month old who has spina bifida. With the two kids and both of us working (even though I work from home) it is getting to be too much for us to handle. I took her to her PCP today for a hospital follow-up, and she is doing a referral to palliative care - longer term then hospice, but insurance/medicare should pay for some of it. Our other choice is assisted living, but that would be close to $4,000/month out of pocket after her monthly social security.
She was diagnosed with Parkinson's and moved in with us (I'm an only child, and she was widowed when I was 18) about 7 years ago. The first few years weren't too bad, but in 2022 she fell and broke her knee cap, then had an aortic valve replaced in 2023. Two days after this past Christmas she was in the hospital for a week with a UTI that went septic and pneumonia, and then was back in the hospital last week with another UTI and anemia. Like your mom, she doesn't want to bathe, forgets to change her Depends (even when we tell her and lay them out for her), rarely washes her hands and never brushes her teeth.
We have a 2 year old and a 2 month old who has spina bifida. With the two kids and both of us working (even though I work from home) it is getting to be too much for us to handle. I took her to her PCP today for a hospital follow-up, and she is doing a referral to palliative care - longer term then hospice, but insurance/medicare should pay for some of it. Our other choice is assisted living, but that would be close to $4,000/month out of pocket after her monthly social security.
Posted on 3/29/24 at 1:52 pm to Pisco
OP, you are not alone. Currently going through similar circumstances with my mother who lives with us. It's disheartening, to say the least. I just know that when I get older or sick I will gladly put myself in a nursing home before I ask my kids to give up their lives to care for me.
Posted on 3/29/24 at 1:54 pm to Pisco
I worry about this with my dad. He's not bad yet but there are signs. He used to read all the time 3-4 books a week and can't keep the plot straight now, my mom says the same thing with watching some movie or TV shows with him.
I work in a field where I'm in and out of clients homes, 3-4 times a year and can see how quickly it comes on in some people. From small slips to 3 months later they just aren't there at all. It's sad and scary.
There's this song by a band called Hot Mulligan that's about his grandma's dementia that I've been listening to a lot lately:
I work in a field where I'm in and out of clients homes, 3-4 times a year and can see how quickly it comes on in some people. From small slips to 3 months later they just aren't there at all. It's sad and scary.
There's this song by a band called Hot Mulligan that's about his grandma's dementia that I've been listening to a lot lately:
quote:
Have you fed the birds, no?
Don't worry, I got it
And no, my brothers not home
You must have forgotten
He died when I was fifteen
Hasn't been here for a long time
Let's talk about something else
Why don't we move outside?
I can see your age
It's in your face
Every wrinkle to a year I can't replace
Won't you tell me how
Watch your house while sitting in my car
Wait and think
How my father said it's spread too far
Soon we'll see
What this illness can do
Probably won't look like you
Didn't think that I would see your memories fade
How your eyes don't light up when you see my face
Would you remember if I never left?
I should've stayed
Would you remember if I never left?
I should've stayed
Oh, I've written all these songs, all meant for you
But I'll turn into a stranger before too soon
Posted on 3/29/24 at 1:55 pm to Pisco
Been through this with my dear mother. Just be there and be present. Love her and show her affection. Kiss and hug her. Even when my mom forgot names and forgot her grandchildren she still loved looking at photo albums of her mom, dad and grandparents. For her, the oldest memories were the last to go. God bless you, her and your whole family. Peace.
Posted on 3/29/24 at 2:00 pm to PJinAtl
quote:
Two days after this past Christmas she was in the hospital for a week with a UTI that went septic and pneumonia, and then was back in the hospital last week with another UTI and anemia
Sounds very similar to what my mother has gone through recently. She was in the hospital last week to get a transfusion due to anemia, following sepsis caused by a UTI about six weeks ago. I wonder if sepsis can cause anemia.
Posted on 3/29/24 at 2:11 pm to Pisco
We had a need for in-home care in a situation w my mother but it's not dementia related. She had severe deformative rheumatoid arthritis for many many years. LSS, she finally was unable to safely walk or stand which limited any chance of self-care.
Here's what I learned from professionals after a severe fall: she was eligible for Hospice through Medicare and her state retirement plan. I had no idea Hospice could be considered longterm care, when evaluated and needed. I've always correlated it w terminal illness end of life care (cancer, etc). Not the case at all. Our nurses had examples of case after case where their care was needed in dementia/other instances spanning over 12 months or even multiple years. COPD for example.
I ramble just to say there may be some relief if you sit down with her PCP and a marketing rep from a Hospice org. Just ask questions and flesh it out.
We opted for 3 days a week care. Full service: bathing, medication facilitation including delivery, feeding if necessary, hygiene, hair and nail care, and so much more. The nurse and aide were invaluable. It cost us nothing out of pocket. She used the service for 19 months.
Sorry to type so much but wanted to give you something to consider. So sorry about your little bird. Hang in there.
Here's what I learned from professionals after a severe fall: she was eligible for Hospice through Medicare and her state retirement plan. I had no idea Hospice could be considered longterm care, when evaluated and needed. I've always correlated it w terminal illness end of life care (cancer, etc). Not the case at all. Our nurses had examples of case after case where their care was needed in dementia/other instances spanning over 12 months or even multiple years. COPD for example.
I ramble just to say there may be some relief if you sit down with her PCP and a marketing rep from a Hospice org. Just ask questions and flesh it out.
We opted for 3 days a week care. Full service: bathing, medication facilitation including delivery, feeding if necessary, hygiene, hair and nail care, and so much more. The nurse and aide were invaluable. It cost us nothing out of pocket. She used the service for 19 months.
Sorry to type so much but wanted to give you something to consider. So sorry about your little bird. Hang in there.
Posted on 3/29/24 at 2:16 pm to Jim Rockford
quote:
Sounds very similar to what my mother has gone through recently. She was in the hospital last week to get a transfusion due to anemia, following sepsis caused by a UTI about six weeks ago. I wonder if sepsis can cause anemia.
UTIs can be so dreadful. One morning, my Mom stepped out of bed and went to the floor. Took her to the hospital by ambulance. She had back issues, so we thought that was the issue. Turned out to be a UTI. She never fully regained her mobility strength that she previously had and we've had live in sitters every since. We do everything possible to avoid UTIs having been warned by the doctor of the many conditions they can cause.
Posted on 3/29/24 at 2:17 pm to Pisco
My mom was diagnosed with early onset at 54. She died at 61. You need to go meet with an estate planner that specializes in getting Medicaid for nursing home care. Your step dad won’t be able to take care of her much longer. My step dad was in a similar situation. Still working and trying at night to take care of her.
We paid the estate planner 5K and in 6 months time he had her approved. Your step will have to setup an LLC and move assets to it. It can be done. Medicaid is designed to bankrupt you but there are loop holes that are available.
We paid the estate planner 5K and in 6 months time he had her approved. Your step will have to setup an LLC and move assets to it. It can be done. Medicaid is designed to bankrupt you but there are loop holes that are available.
Posted on 3/29/24 at 2:17 pm to Pisco
Home health care may be available. Check your mom's insurance to see what is covered. Even having a healthcare worker come in a few times a week could help a lot. If you have a family doctor, he or she can prescribe home health care. You can get help with bathing, medication management, and suggestions to deal with agitation.
This post was edited on 3/29/24 at 2:22 pm
Posted on 3/29/24 at 2:25 pm to TIGERSTORM
quote:
I work in a field where I'm in and out of clients homes, 3-4 times a year and can see how quickly it comes on in some people. From small slips to 3 months later they just aren't there at all. It's sad and scary.
Eight years ago my mother had a seizure caused by the flu, and it resulted in a bout of psychosis. She became delirious and combative. At the time the Dr. said it might be the tip of the iceberg, but she recovered and was fine for a couple of years. Then another series of seizures, diagnosed with epilepsy, put on meds for that.
About this time my dad started noticing personality changes but nothing major. Four years ago another psychotic break but she recovered from it too. Her executive functioning started to decline, but she was still driving, cooking, etc up until about 1.5 years ago. At that time she started having delusions and hallucinations and there would be days when she was very confused, although at other times she seemed pretty normal. Last December a UTI put her in the hospital and from there she went to the nursing home for rehab. Since then it's been back and forth from nursing home to hospital. Covid, another seizure, another UTI, this time with sepsis, then anemia. Now she's so physically weak that even if she didn't have dementia she would still need to be in the nursing home. Thankfully she seems relatively content there.
She doesn't have an official diagnosis as to what's causing it but the Dr thinks it's microvascular changes in the small blood vessels in her brain.
This post was edited on 3/29/24 at 2:29 pm
Posted on 3/29/24 at 2:33 pm to Pisco
I’m very sorry you’re going through this. I went through this with my mom and sister. Forget the pharmaceutical snake oil, like Namenda XR, that costs $400/month…it’s useless. She’s going to get worse in the evening. It’s called Sundowners.
Be patient and understanding with her. Don’t be confrontational. Don’t take it personally if you’re accused of some crazy stuff. Take valuables away and keep guns and knives locked up.
Keep Social Services out if possible. They will make her a “ward of the State” and bleed her dry of assets. That happened to my sister.
Get Power of Attorney both financially and medically…yes, they are separate entities. Transfer any valuable assets, like house and land out of her name or they can possibly be seized by the evil State and Social Services.
Unless you have a frick ton of money. I’ll give you an example. I eventually couldn’t take care of my mom anymore and also work. I placed her in a 5 star nursing home and there’s a waiting list. $1,400/month. But once they become unruly, and they will, they will be kicked out. Went through 4 nursing homes. The final costed me $6,000/mo.
I’m not trying to scare you…just prepare you. You can let her become a Ward of the State and they will seize all her assets and throw her in the shittiest nursing home there is.
Keep her engaged with family and friends during the day. Just know come sundown it’s a different ballgame. Hopefully get her some meds to help her sleep early.
Again, be patient with her and don’t take anything personally she says. It’s a horrible disease. Sorry man.
Be patient and understanding with her. Don’t be confrontational. Don’t take it personally if you’re accused of some crazy stuff. Take valuables away and keep guns and knives locked up.
Keep Social Services out if possible. They will make her a “ward of the State” and bleed her dry of assets. That happened to my sister.
Get Power of Attorney both financially and medically…yes, they are separate entities. Transfer any valuable assets, like house and land out of her name or they can possibly be seized by the evil State and Social Services.
Unless you have a frick ton of money. I’ll give you an example. I eventually couldn’t take care of my mom anymore and also work. I placed her in a 5 star nursing home and there’s a waiting list. $1,400/month. But once they become unruly, and they will, they will be kicked out. Went through 4 nursing homes. The final costed me $6,000/mo.
I’m not trying to scare you…just prepare you. You can let her become a Ward of the State and they will seize all her assets and throw her in the shittiest nursing home there is.
Keep her engaged with family and friends during the day. Just know come sundown it’s a different ballgame. Hopefully get her some meds to help her sleep early.
Again, be patient with her and don’t take anything personally she says. It’s a horrible disease. Sorry man.
Posted on 3/29/24 at 2:35 pm to Pisco
Sorry to hear this. Best wishes to you and your family
Posted on 3/29/24 at 2:38 pm to Pisco
Man that's tough. My prayers to you and your family. I had to deal with it with my grandmother for a few years.
This post was edited on 3/29/24 at 2:41 pm
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