elderly care/dementia/in-home nurses

chiquimonkey

as some here might know, been dealing with some family illness the past 3 months. there may be signs of early dementia with my mom. and the possibility of having in-home care or a nursing facility is something i'm sadly having to look into. god willing things improve and it isn't dementia, but i figure it doesn't hurt to start getting educated about it all.

i'm joining a support group offered on the campus where i work, but thought i'd cast a line here too in case anybody has links to good resources, or any sort of advice. i know there are some good folks here so i figured it wouldn't hurt to ask

peace and love,
b

Matt of Tassie

Hey

I hope that its not dementia and that things get better for your mum soon.

Unfortunatley my Dad did suffer from dementia and is sadly no longer with us.
One of the best things that you can do if it is dementia is to join a support group where you can meet and talk with other people who are going or have gone through this illness with a loved one. This in my experience helped greatly to know that you are not alone in dealing with difficult descisons.

Make sure you take care of yourself as well.

m

Claireack

I dont' know where about's you are, but I'm in the UK and as part of my job I visit patients in nursing homes/residential care homes.

Hopefully it isn't dementia, but if it is, seriously consider putting her in a home. Nursing homes over here have specialisted units for the elderly with dementia etc. They can be looked after specifically to meet their physical and mental requirements, recieve 24 hour care, be monitored for changes in thier coniditon etc etc. One of the homes that I go to is predominantely for the elderly with problems such as dementia, the staff there are fantastic, they have staff which organise trips out, music afternoons, arts and crafts etc. The patients are involved as much as they were able to to varying degrees.

My nan was actually in this home, which was strange when I was visiting in a work related capacity. But it was good to know that she was looked after. Before she went in she started to wander a lot, and then have no idea where she was, she was safe there.

Good luck with it all.

stargirl69

I am sorry to read of your situation.My dad was diagnosed with Alzheimers when he was 65.. although it affects everyone differently,dad needed so much medical and physical care,he spent his last six years of his life in a specialist hospital.Sadly my dad passed away three weeks ago.
I don't know where you are but in the UK there are many services out there to help.

Mum began by being allocated a day care worker,she came into the home and helped mum with dads personal care,supported mum and offered her advice of services in the area.
Dad began going to a day centre twice a week.A bus would pick him up and he would spend the day with other elderly people,chatting,playing games etc.At first he didn't want to go and made mums life hell.But he ended up really liking it.It was the only time he got out of the house

Twice a year he went for a week to a care home.This gave mum a much needed break and gave the medical team opportunity to assess dad's health.

When dad did have to go into the specialist hospital permenantly he was extremelly well cared for,the staff were briliant with us too.We could visit as much as we could.Nothing was ever too much bother.

I didn't go for any group,it's not really my thing but as a family we all stuck together and supported each other.

What I did do was make up a photo album for dad with photo's starting with him as a young child and working the whole way through his life.His short term memory was shot but he absolutely loved looking at those photo's and he remembered long term things.
I also gave him an mp3 player as he loved music and days when he seemed vacant I'd put his mp3 player on and his face would light up.

I found doing simple things that I knew dad got great joy from really helped ...ánd it was something we were able to share.

I wish you,your family and your mum love and peace at this difficult time.If you want any more info please feel free to p.m me

chime

Hi Chiqui

I know you're in the US so things will be different but another Brit checking in!

My Grandma suffered with dementia and one of the things we worried about was that she was not taking care of herself, eating etc. We just had to contact social services and then she was assessed for what level of care she required as she wanted to stay in her own home. She was allocated carers to came in the morning and help her get dressed and prepare her breakfast and prepare lunch and leave it in the fridge, she then had 'meals on wheels' (a hot meal delivered in the evening) and then another carer come and helped her wash and get ready for bed. She also attended lunch clubs etc ato socialise nd she would be collected and taken home.

After a couple of years her dementia had progressed to where she went into a care home.

I hope it isn't dementia but think you have done the right thing by joining a support group.

We have an organisation called Age Concern that advise the elderly on their rights etc. I don't know if you may have something similar??

Sorry the different country means I can't provide much help so I'll just give some of these instead {{{chiqui}}}

Heatherj43

Both of my parents have dementia/alzeheimer. Insurances won't pay for a nursing home. They say the only way you can get in one is if they have an illness that they can get better from and they cannot get better from dementia. Medicare will pay for 100 days and then thats it! After that its self-pay, which can be about $40,000 a year. We have been going thru this for about a year now amd its hell.
My nephew is caring for them now and the state pays him $80 a month, which they just stopped.
If you do find a way to get them into a place please let ,e know. We have tried everything.

Sawyer

been through that and in home care helped.....especially the changing diapers part.....they were very sweet people.

Austicman

Hey Chiqui,

Firstly I hope its not dementia.A Urinary tract infection can effect the chemical balance in the brain and bring on dementia like symptoms so I've got fingers crossed for you.

If it is. Does she live with anyone? Its important that someone is there all the time for her. My Mom has dementia and Dad looked after her at home for about 6 years before she had to be put into high level care about 6 months ago. For the last year she was at home we had a nurse/maid come for 3 hours 3 times a week. Not so much to help clean or anything but to give Dad a break from her. I was living with them at the time and its such energy and morale draining work looking after them so its really important for the primary carer gets some time away from them everyday or they'll burn themselves out really quickly.

decides2dream

oh chica, i so feel for you and your family. my father suffered from alzheimers at the end of his life, it was not fun. :( luckily, he was in a position to pay for a home health aide, and so that's what we did. we went through a few before we found one that worked well enough, and my sisters, my mom and myself were still very much involved, taking him to appointments, checking up on him, shopping for him, etc. it's so difficult. i really have no advice for you, just wish you the best......*hugs*

Who Princess

I feel for you. Whether it's dementia or not, coordinating care for an older person can be very complicated. I worked in social services for many years and part of that time was spent working with families of older adults. I don't know what state you live in but I would start by finding the Area Agency on Aging that serves the city you live in. They should be able to help you find the resources that are available locally. They will probably have case workers on staff that can help you set up a care plan or at the very least make referrals to someone who can help you locate the services that will meet your needs. If your mom needs to move to an assisted living facility, they should be able to help you locate the ones that are available. There is an AAA in every state with local offices in most large cities and they can be a great source of information.

chiquimonkey

everyone, thank you SO much for your advice and kind words. we met with the nurse today that will be coming in to check on my mom, really nice. i'm hoping and praying things take an upswing soon. i will check out all the suggestions you were all so kind to provide.

from the bottom of my heart, thank you

Who Princess

Chiqui, I'm glad to know that you are feeling encouraged. Here is a link for you to find the Area Agency on Aging that serves your community. I thought I would go ahead and post it in case anyone else is interested because their web site is kinda weird to navigate.

http://www.n4a.org/about-n4a/?fa=aaa-title-VI

Lizard

Good Luck B....

My mom was sick about 3 years ago and needed in home care. Luckily she had long term care ins. that helped and she did get better and does not need help now so hopefully your mom DOES get better. But like you said--you can never get too prepared. I think you are on the right tract looking for help.

Heatherj43

whoprincess wrote:

I feel for you. Whether it's dementia or not, coordinating care for an older person can be very complicated. I worked in social services for many years and part of that time was spent working with families of older adults. I don't know what state you live in but I would start by finding the Area Agency on Aging that serves the city you live in. They should be able to help you find the resources that are available locally. They will probably have case workers on staff that can help you set up a care plan or at the very least make referrals to someone who can help you locate the services that will meet your needs. If your mom needs to move to an assisted living facility, they should be able to help you locate the ones that are available. There is an AAA in every state with local offices in most large cities and they can be a great source of information.

I am a social worker. I have spoke with the Area Agency on Aging. The fact is there is no care for people with dementia in Michigan! Its all self-pay, which is at least $40,000 a year. This is only for older adults who have dementia. If they have some illness in which they can get better they can get help, but because dementia has no cure and you cannot get better, ther isw no care, especially in a nursing home. My mom needs way more than assisted living, she gets that with us.
I wonder what would happen if we all bailed out and adult protective servivces were brought in. I am thinking that is the only way to get help. I find that so sad, but its one of my options.

Who Princess

Heatherj43 wrote:

whoprincess wrote:

I feel for you. Whether it's dementia or not, coordinating care for an older person can be very complicated. I worked in social services for many years and part of that time was spent working with families of older adults. I don't know what state you live in but I would start by finding the Area Agency on Aging that serves the city you live in. They should be able to help you find the resources that are available locally. They will probably have case workers on staff that can help you set up a care plan or at the very least make referrals to someone who can help you locate the services that will meet your needs. If your mom needs to move to an assisted living facility, they should be able to help you locate the ones that are available. There is an AAA in every state with local offices in most large cities and they can be a great source of information.

I am a social worker. I have spoke with the Area Agency on Aging. The fact is there is no care for people with dementia in Michigan! Its all self-pay, which is at least $40,000 a year. This is only for older adults who have dementia. If they have some illness in which they can get better they can get help, but because dementia has no cure and you cannot get better, ther isw no care, especially in a nursing home. My mom needs way more than assisted living, she gets that with us.
I wonder what would happen if we all bailed out and adult protective servivces were brought in. I am thinking that is the only way to get help. I find that so sad, but its one of my options.

Heather, it is similar here in Texas. There are some excellent private pay Alzheimer's facilities and there are many nursing homes with Alzheimer's units but of course the family either needs to have the financial resources or long term care insurance. Sometimes it becomes a diagnosis game for the older person, with them diagnosed with anything but Alzheimer's so that they can be in a nursing home and spend down their assets until they are eligible for Medicaid. This was the case for my grandmother, several years ago. Her dementia was never really addressed by her primary care doctor but after she fell and broke her hip it was obvious she could no longer live alone. She actually thrived (physically) for a few years in a nursing home because she ate better and had more contact with people although obviously her dementia continued to progress.

I recommended contacting AAA not because they could assist with caring for an older adult with dementia but as a starting point in finding what care is available. AAA is an information and referral and advocacy service. They don't provide any kind of direct services.

I feel bad for your situation with your mom and how limited your options are. It must really hurt to be a caring daughter as you are and yet feel that she could have more care options if you took a drastic route like letting adult protective services get involved. I hear all these people yelling and fussing about healthcare reform and I never seem to hear anyone mention eldercare. I know there are an awful lot of people out there like you and your family that are caring for someone but nobody seems to be taking them and their aging relatives into consideration.

I am sometimes afraid that my mom will have Alzheimer's since her own mother did. My mom and I have talked about it, because she is also a little afraid. She is 82 and lives in the same town. Her health is good and she is very active. She has friends who have been diagnosed with Alzheimer's and it upsets her a lot. I have promised her that if I become concerned about her I will let her know and we will go to the doctor together.

I don't have any answers for you, Heather, but I hope somehow you get more support with caring for your mom! :angel:

Heatherj43

whoprincess wrote:

Heatherj43 wrote:

whoprincess wrote:

I feel for you. Whether it's dementia or not, coordinating care for an older person can be very complicated. I worked in social services for many years and part of that time was spent working with families of older adults. I don't know what state you live in but I would start by finding the Area Agency on Aging that serves the city you live in. They should be able to help you find the resources that are available locally. They will probably have case workers on staff that can help you set up a care plan or at the very least make referrals to someone who can help you locate the services that will meet your needs. If your mom needs to move to an assisted living facility, they should be able to help you locate the ones that are available. There is an AAA in every state with local offices in most large cities and they can be a great source of information.

I am a social worker. I have spoke with the Area Agency on Aging. The fact is there is no care for people with dementia in Michigan! Its all self-pay, which is at least $40,000 a year. This is only for older adults who have dementia. If they have some illness in which they can get better they can get help, but because dementia has no cure and you cannot get better, ther isw no care, especially in a nursing home. My mom needs way more than assisted living, she gets that with us.
I wonder what would happen if we all bailed out and adult protective servivces were brought in. I am thinking that is the only way to get help. I find that so sad, but its one of my options.

Heather, it is similar here in Texas. There are some excellent private pay Alzheimer's facilities and there are many nursing homes with Alzheimer's units but of course the family either needs to have the financial resources or long term care insurance. Sometimes it becomes a diagnosis game for the older person, with them diagnosed with anything but Alzheimer's so that they can be in a nursing home and spend down their assets until they are eligible for Medicaid. This was the case for my grandmother, several years ago. Her dementia was never really addressed by her primary care doctor but after she fell and broke her hip it was obvious she could no longer live alone. She actually thrived (physically) for a few years in a nursing home because she ate better and had more contact with people although obviously her dementia continued to progress.

I recommended contacting AAA not because they could assist with caring for an older adult with dementia but as a starting point in finding what care is available. AAA is an information and referral and advocacy service. They don't provide any kind of direct services.

I feel bad for your situation with your mom and how limited your options are. It must really hurt to be a caring daughter as you are and yet feel that she could have more care options if you took a drastic route like letting adult protective services get involved. I hear all these people yelling and fussing about healthcare reform and I never seem to hear anyone mention eldercare. I know there are an awful lot of people out there like you and your family that are caring for someone but nobody seems to be taking them and their aging relatives into consideration.

I am sometimes afraid that my mom will have Alzheimer's since her own mother did. My mom and I have talked about it, because she is also a little afraid. She is 82 and lives in the same town. Her health is good and she is very active. She has friends who have been diagnosed with Alzheimer's and it upsets her a lot. I have promised her that if I become concerned about her I will let her know and we will go to the doctor together.

I don't have any answers for you, Heather, but I hope somehow you get more support with caring for your mom! :angel:

My mom gets Medicaid too but it won't cover nursing homes for dementia here. And yep, it will be ashame if I have to resort to protective services. My parents paid taxes all their lives and now are left like this. Its pitiful what this country does to their weak, sick and elderly.

pandora

My Moms death certificate lists sepsis/dementia as cause
I always felt she was so with it- until the very last days. She had Medicaid which covered everything but I must say with nursing homes keep a very high profile- I went daily- twice a day near the end of her life.
You must always watch- and be careful the meds your loved one is put on- they started giving my mom shots, I can't remember what, without my permission supposedly to help control her.They said they stopped that when I raised hell. She was the type of woman who spoke her mind- if she liked you which was most people -all was good- look out if you were on her shit list though. Her Doc was part of the home which I think isn't so good either. I think we should have found an independent Doctor.
For me the moral of the story- keep an eye on the care- and listen to your loved one even if they have a touch of dementia- they may be able to let you know if things aren't right there under anothers care.

Heatherj43

pandora wrote:

My Moms death certificate lists sepsis/dementia as cause
I always felt she was so with it- until the very last days. She had Medicaid which covered everything but I must say with nursing homes keep a very high profile- I went daily- twice a day near the end of her life.
You must always watch- and be careful the meds your loved one is put on- they started giving my mom shots, I can't remember what, without my permission supposedly to help control her.They said they stopped that when I raised hell. She was the type of woman who spoke her mind- if she liked you which was most people -all was good- look out if you were on her shit list though. Her Doc was part of the home which I think isn't so good either. I think we should have found an independent Doctor.
For me the moral of the story- keep an eye on the care- and listen to your loved one even if they have a touch of dementia- they may be able to let you know if things aren't right there under anothers care.

My mom did get to spend 100 days in a nursing home and I made sure I spent most of the time with her. I did notice that patients who didn't have anyone there hardly got any care. they would usually just put these people in wheel chairs in the hall during the day. Because I was there, my mom got all kinds of care, the problem is she was only allowed those 100 days.
My mom needs meds to help her. She will get naked and run around outside. She does all kinds of stuff and later knows she did it and is so embarassed. We give her Ativan, its a mild anti-anxiety, it works great. The only issue is my nephew, who cares for her, he worries about her getting addicted. He still just doesn't get how sick she is, even though he watches her do these things every day.
EDIT: I just went and called my mom. She just cries and cries out of happiness that my nephew is caring for her. She has done that about me often also. She doesn't want to. It means he isn't giving her the Ativan. When she takes the Ativan she doesn't realize she even needs care.

pandora

I wouldn't think at this time in your Moms life that addiction should be a concern.
Comfort, safety, peace, happiness is how we all want to spend our last years even if that means taking happy pills I would think.
I don't feel I'm afraid to die but I know I'm afraid to be that very old woman who needs someone to take care of me- I too would cry happy sad tears- those of appreciation and those of wanting to be the woman I once was.
I hope your nephew will come to learn that these meds are good for your Mom. The starting and stopping might not be so good either- might be a bit of a rollercoaster.

Heatherj43

pandora wrote:

I wouldn't think at this time in your Moms life that addiction should be a concern.
Comfort, safety, peace, happiness is how we all want to spend our last years even if that means taking happy pills I would think.
I don't feel I'm afraid to die but I know I'm afraid to be that very old woman who needs someone to take care of me- I too would cry happy sad tears- those of appreciation and those of wanting to be the woman I once was.
I hope your nephew will come to learn that these meds are good for your Mom. The starting and stopping might not be so good either- might be a bit of a rollercoaster.

Yeah, I can tell when she is on that roller coaster. I try to explain but he thinks he knows better. I had the doctor thry to get it thru his head but yet I still think he doesn't give my mom the meds she needs. The answer is for me to take care of her, but I am just not willing and/or able so I don't know what to do.

pandora

I knew I couldn't take care of my mom either- I know my limitations. It would have had a negative impact on our relationship not mention at the time my homelife- hubby and 2 preteens. But I still feel guilty a little about it.
Not sure how my Mom lucked out with medicaid- they covered everything- she was there 4 years.
She got it in WI then I moved her here to GA after we came down and it just all got picked up. She was well enough to spend a few years on her own in an apartment before she had to go to the nursing home. It was after a fall that broke her hip- disaster for the elderly something your nephew might want to consider also. The meds may keep her safer.
I wish you could get the same benefits my mom had and your worries could be over and you could go see her daily there. Makes an american mad that we can't provide better for our elderly.

Heatherj43

pandora wrote:

I knew I couldn't take care of my mom either- I know my limitations. It would have had a negative impact on our relationship not mention at the time my homelife- hubby and 2 preteens. But I still feel guilty a little about it.
Not sure how my Mom lucked out with medicaid- they covered everything- she was there 4 years.
She got it in WI then I moved her here to GA after we came down and it just all got picked up. She was well enough to spend a few years on her own in an apartment before she had to go to the nursing home. It was after a fall that broke her hip- disaster for the elderly something your nephew might want to consider also. The meds may keep her safer.
I wish you could get the same benefits my mom had and your worries could be over and you could go see her daily there. Makes an american mad that we can't provide better for our elderly.

Medicaid is a state ran program. Here in Michigan a governor we had a while back, Engler, cut everything and no one has put things back in order. He cut all state hospitals, while building 32 prisons, so the mentally ill are in prisons. He even cut the state hospitals for kids. One school district went out of business cuz of funding cuts by this ass.
I guess we could move my parents to one of these states that takes care of their seniors, but don't they ahve to live ther at least 6 months to get help?
Oh I just noticed the hip break. My mom can get in a nursing home for that, but we don't want to break her hip. LOL.

pandora

Heatherj43 wrote:

pandora wrote:

I knew I couldn't take care of my mom either- I know my limitations. It would have had a negative impact on our relationship not mention at the time my homelife- hubby and 2 preteens. But I still feel guilty a little about it.
Not sure how my Mom lucked out with medicaid- they covered everything- she was there 4 years.
She got it in WI then I moved her here to GA after we came down and it just all got picked up. She was well enough to spend a few years on her own in an apartment before she had to go to the nursing home. It was after a fall that broke her hip- disaster for the elderly something your nephew might want to consider also. The meds may keep her safer.
I wish you could get the same benefits my mom had and your worries could be over and you could go see her daily there. Makes an american mad that we can't provide better for our elderly.

Medicaid is a state ran program. Here in Michigan a governor we had a while back, Engler, cut everything and no one has put things back in order. He cut all state hospitals, while building 32 prisons, so the mentally ill are in prisons. He even cut the state hospitals for kids. One school district went out of business cuz of funding cuts by this ass.
I guess we could move my parents to one of these states that takes care of their seniors, but don't they ahve to live ther at least 6 months to get help?
Oh I just noticed the hip break. My mom can get in a nursing home for that, but we don't want to break her hip. LOL.

No you don't!
I think my Moms started when she got here in GA no wait of any kind and I thought it was being deposited federally but could be wrong. We moved her here in 93 so its hard for me to remember- besides thats a generation ago everything is different now I'm sure. Not as good probably. I think moving your parents to a state that actually appreciates its elderly and helps to provide for them might be a good idea.Near the end of my Mamas life though boy did she want to be back in WI. Culture shock for her here- me too to some degree, still.
Wow I'm thinking old Engler has his share of bad karma around him. Thats all we can hope for a creep like that.
I hope you can find a good solution

decides2dream

Heatherj43 wrote:

I did notice that patients who didn't have anyone there hardly got any care. they would usually just put these people in wheel chairs in the hall during the day. Because I was there, my mom got all kinds of care...
.

this is my personal greatest fear for myself and aging. i so hope and pray that i can take care of myself right up until the very end of my life, and/or my husband outilves me and also is in good shape. :P we are both the youngest in our families, childfree and even amongst my nephews, we live in a different state. given all that, more than likely if i were in nursing care, i'd have no one visiting me at all, or quite rarely. i am 100% for the whole death with dignity thing, so man....i hope i can hold it together.




and chica, haven't seen you around these parts in awhile...hope all is going well with your mom, your family and YOU!

chiquimonkey

decides2dream wrote:

and chica, haven't seen you around these parts in awhile...hope all is going well with your mom, your family and YOU!

thank you. yeah it's a rough time right now. just trying to get thru each day as best i can.

Heatherj43

decides2dream wrote:

Heatherj43 wrote:

I did notice that patients who didn't have anyone there hardly got any care. they would usually just put these people in wheel chairs in the hall during the day. Because I was there, my mom got all kinds of care...
.

this is my personal greatest fear for myself and aging. i so hope and pray that i can take care of myself right up until the very end of my life, and/or my husband outilves me and also is in good shape. :P we are both the youngest in our families, childfree and even amongst my nephews, we live in a different state. given all that, more than likely if i were in nursing care, i'd have no one visiting me at all, or quite rarely. i am 100% for the whole death with dignity thing, so man....i hope i can hold it together.




and chica, haven't seen you around these parts in awhile...hope all is going well with your mom, your family and YOU!

I know! I am worried about myself. The research is saying this stuff is hereditary and in each subsequent generation its being seen younger abnd younger. I am no longer young! I have 2 kids who will not be of assistance to me. I would so rather die young than be like my parents,
I began having seizures several years ago and my short term memory is pretty wiped out. I often wonder if its really the early stages of some kind of dementia. I lose entire days. My docs don't realize how serious I am cuz they see me when they see me, but my friends and neighbors all tell me they see how wiped out my memory is and about losing entire days.
I

chiquimonkey

thanks again for the links here, i'm going to my first support group meeting tomorrow. whatever resources i can find there i'll share here for sure!

god i'm tired.

decides2dream

chiquimonkey wrote:

thanks again for the links here, i'm going to my first support group meeting tomorrow. whatever resources i can find there i'll share here for sure!

god i'm tired.

i feel for ya chica, i really, really do.
when my dad first became ill, it was so daunting!
soo many emotions to deal with, right along with all the reality of the situation. it's a rough road.

*hugs*
i wish you and your family, the BEST, always.....


edit - heather......oh my, my heart goes out to you! i wish YOU the very best too, it's so scary!

chiquimonkey

decides2dream wrote:

chiquimonkey wrote:

thanks again for the links here, i'm going to my first support group meeting tomorrow. whatever resources i can find there i'll share here for sure!

god i'm tired.

i feel for ya chica, i really, really do.
when my dad first became ill, it was so daunting!
soo many emotions to deal with, right along with all the reality of the situation. it's a rough road.

*hugs*
i wish you and your family, the BEST, always.....


edit - heather......oh my, my heart goes out to you! i wish YOU the very best too, it's so scary!

thank you dear. yeah it's really overwhelming, it's enough dealing with my mom's health but then having to figure all this other stuff out....ack!

chiquimonkey

well today we do a trial run with our mom coming home for the weekend, to see how it goes. i feel nervous :?

wish us luck! i shall pick up some 2-buck chuck on the way home this evening, that much is ensured

decides2dream

chiquimonkey wrote:

well today we do a trial run with our mom coming home for the weekend, to see how it goes. i feel nervous :?

wish us luck! i shall pick up some 2-buck chuck on the way home this evening, that much is ensured

lots, and lots, and lots of LUCK!