I came late to the care home arrived at 6:16 pm was busy today.so as usual as if i was working i prepared
his dinner for them to heat up and feed him.
When im at work i call and ask did he eat ,yes im assured he is good ,so i have to believe they did feed him
Well tonight i was not at work and showed up unexpectaly,yup to my surprise his food cold sitting beside
him about 4 mouthfuls missing? hmm his desert untouched his drinks not given.

So i said to the nurse im not impressed who was feeding dennis i want a name ?
Well i was there an hour in that hour i heated his food he ate it all including dessert and a chocolate bar and over
half his drinks,changed him twice,did his laundry all while he was as they call it BOPPING .
The nurse never came back ,i know she didnt want to discuss with me,so the head nurse came after i stood at desk
waiting for that name.
She said to me they did try to feed him but he moves to much to feed ,OMG ,how long has this been going on
Does that mean he doesnt deserve to eat .
I have told them he takes at least a half an hour to feed him,so what in a half an hour you could only get 4 mouthfuls in
Im so at my wits end with all of this .
The truth was the staff had no time to feed him,and well usually im there for meals i know he is difficult and wow
so messy to feed ,but can that man eat,his appettite is huge he is 54 not 90.
Breaks my heart no know such little effort is put into his care.
On the way out i see the staff worker i stop him ,and ask who fed dennis tonight he said i started about 10 min then
i had to go do others things .the truth,the truth the truth ,he spoke the truth ,he said he left it to another staff member
to finish but she never had time either.
Im so tired of them defending there staff .
If they dont have time to feed him please please just tell me ,i already know they dont ,but they keep assuring me
they do .But they dont,a mouthful here a sip every hour in between there work load of interuptions.
So tonight again iam the cow that walked through the door ,but who is going to be his voice ,only me
but it is taking its toll on me,tired so tired of feeling like this ,i dont like to be on the outs with everyone,didnt
eat my own dinner again to upset ,scared to go to work tomorrow ,who feeding my husband .
Bopping well i can tell you id like to BOP a few heads there .
His movement are not going to go away ,it is not that hard to feed him him really just takes patients and time
Kinda like loving him alot of time and patients.
And this was the regular staff on afternoons they didnt change ,it was day shift that changed so oh my god my mind
is racing now.
Time for a camera i think i need an advocate for me .

I feel so much for you. I am so sorry I have no words of advice. I would be furious, but I also know one must control expressing anger as not to give the place reason to refuse care.

I understand so much how the task of feeding can be such a challange, but when you stated it is like "loving", I have recently come to see that and it helps me so much. My Wife is very sensitive to the fact that if I seem aggrovated in assisting her, she will stop eating. but when I assist with love (and time) she enjoys her food and eats well.

Wouldn't that be a criminal act of neglect, for them not to be giving someone food? And yet I understand what Joe is saying about having to walk a fine line so they don't kick him out. If it's possible for you to look for another care home, you might want to do that, but I'm sorry what you're going through. HD care isn't easy. My dad passed away a few weeks ago, and my mom took care of him until his last few weeks of life, then he became a danger to others because of his halucinations, and had to be placed in the hospital on a security guarded ward, and my dad had to be locked into a geriatric chair all day, so he couldn't do any harm. It was the only safe choice though, and all the staff loved him. My dad even told the security guard one day that my mom hadn't been bringing him any chocolate, and that he had to talk to my mom about that lol. So, the security guard told my mom that dad wants chocolate lol, so she started bringing him chocolate lol. Sorry for the situation you're in.

I can understand maybe they're understaffed and have a lot to do, but that doesn't solve the problem that they are providing poor care. Maybe there is a volunteer group you could get involved to come in and help the staff with issues such as this. I suspect your husband isn't the only one getting less than optimal treatment.

I'm so sorry to see that you are having such difficulties with his care home
My father was in hospital recently for almost 2 months. They were very aware of his situation. Aware enough that the food they ordered for his meals came soft or cut up to minimize choking. BUT! His plate would only stay for the hour they allowed and not a single person helped him eat anything! He would manage maybe 2 or 3 bites on his own for every meal and honestly, most of that he ended up wearing.
I can understand your frustration because the nurses and others were always the first to comment about how little food he would eat or how he had such difficulties eating but NOT ONE of them would HELP him eat! If it wasnt for them putting a straw in his recloseable milk carton before they left him to fend for himself, he wouldnt have gotten any nourishment at all!
I have heard of people placing hidden cameras in similar situations. There was an incidence in our local news in the last yr even... When it's your word against theirs, what other option do people have to get proof of these things happening or to get anyone to take notice?
I hope you find the right caring individual to hear your story and help him

Thank you all for your replies
Oh the horror stories or so called memories are harboured deep inside ,but sometimes they just need to come out.
And sometimes they need to stay buried,but when your trust is challenged and faith is others is low ,it is hard
to keep going i tell yah ,as you all can understand,then suddenly those memories are being dragged out of you
triggering a response deep within that will all consume you and drag you down so far you say things,do things
that you dont want to,out of shear deseration ,exhuastion, but mostly fear.


Last night i went in about 5pm,the usual ,saw half of his day food uneaten unoffered sitting on the bedside,drinks too
hmm? so again i went to manager and asked can you please find out why they never had time to feed dennis?
Earlier i had called from work and was assured yes dennis was fed and drinks given,so back to work i go,felt
content with her words.
The managers response to me was .Im sure they fed him ,so i brought up last week as this was the first time i had
the chance to discuss it with her.
She went on with redicoulous things remedy the situation,like getting his weight,feeding them there food not myn
talk to the doctor? It was really getting under my skin ,and i said why are you still defending your staff.?
So now we are out side his room ,and a care aide over heard us talking ,she interupted and said oh i never gave him
the yougurt and drink yet cause he is full ? he just ate his pancake and eggs.Im confused so is manger she says
so what was he given for lunch ,and the care aide said i dont know i just started at 3 pm and saw he was hungry
and he had no food? Wow how nice of her to do that for him hugs to her.
Well it turns out day shift never gave him his day food at all,sat in a fridge all day as i started to absorb that
in ,i looked at the manger unfortunatly my tears were there ,i said all day no food,how, i even called at 10:30am that day
to remind them ,make sure he gets his food and drinks .
Well the manger was very lost for words at the point she never even tried to defend her staff.
All she could say was Im so sorry,and walked away.
Im hoping for truse today,really iam ,it was good to for her to hear it from another person.
I dont want to get people in trouble ,but when im stressed and worried about him i cant do my job and then im in
trouble at work .
And on the humorous side ,i asked a care aide have you seen a cup like this ,she said to me I dont know this is my
first shift here,i smiled at her and said of course is
Sorry for venting like this.i feel so negative all the time when i post like this.
And yes the fear of speaking out does spark the fear in me that they will try to place him elsewhere ,and waaaay worse
and waaay farther away .
It is his birthday on the 4th he will be 55 my day off and iam going to make his favorite Angel Food cake .
Is it a Huntingtons thing lol my hubby loves his chocolate too,down to reeses peanut butter cups now cant eat the other
ones to hard,but lol usually two for him and one for me.
Thanks for listening.

I understand your frustration, my son lost 30 lbs in 4 months at the NH. I was nuts trying to get them to do their job. I ended up bringing him home, could not take it any more. Not for everyone but I was able to make it work, it will be 1 year in May that he has been home.
It was not helpful for me but maybe the long term care ombudsman in your state could help?

Take care,
Carla

Wow 30 pounds is alot.
So good you were able to bring your son home.
I would if had proper housing ..no stairs etc.
I cant afford to move nor give up my job.
One thing about this disease it hits us right in the middle or lives.
We have to be normal working ,paying people and the not so normal people too .
Doing double duty is hard,i often try to imagine him home so i could take a day off,but i know that just
cant happen.
She wanted me t stop bringing his meals in,and then in month weigh him,I said and what ,oh he lost 10 lbs,i said
i will not see him suffer to come to any month long trial.
She said to me can you come in and stand on a scale with him to get his weight,lol i said get your staff to stand
on one,omg how hard is that.
She said to me but your his favorite ,grrrrrr favorite whatever ,im his wife, pepsi is his favorite .he trade me in anyday
for a can of pepsi
How is your son doing now can i ask and how old is he?
I still have two at risk ,can i ask how you handled the news of your son having HD ,i have a few concerns iam
not going to handle that news mentally again if one of my children get it. If you dont want to answer thats okay i will
understand hugs .

Actually, both of my son's have HD. One still lives on his own and has 2 kids at risk. Tim, the son I brought home is doing great. We were blessed to have a way to build a place onto our home for him and his brother eventually. It turned out great and he loves it! It's very nice to not have to stress out over what is going on at the NH. I work part time and pay a lady to help in the afternoon. So far this is the best thing I've done to beat HD.

Finding out that both of my sons have HD was devastating. Still is if I stop and think about it. I try to stay positive, but sometimes, not so much. It happens.

Take care,

Carla

Thanks for answering me ,im so sorry to hear about your sons .There was no mistake when God gave them to you
I cant believe you work as well ,amazing truly amazing.
I wish we were closer i would love to meet you in person.
And your son too .
Where i live iam very much alone learning as i go,not much more learning left i would think,i know no other
families or people with the same feelings as we do.
What started out as secrectcy many years ago turned into isolation in the end.
I keep the door closed at the care home at all times.
Today is his birthday so emotionally it is a hard one.
Life expectancy? how much longer does he have, will this be his last birthday,do i wish him many more or is tha
just cruel,beat the odds on time.
I whispered over his head Happy Birthday baby,and kissed him.sat in the chair and starred out window ,while
he starred at me ,felt like we were a photograph frozen in time.
I didnt move, he didnt move,kinda eerie in a loving way.
Dont know what he is thinking ,sure hope he doesnt know what iam thinking.
His sisters have not contacted us since his mothers passing ,never been to see him once,and yet every year on his
birthday or holiday i wait for the phone to ring ,but it never does.
Today will come and go and well im greatful for our morning together ,and will go back for dinner soon,just like
our normal day.
Didnt make the cake to tired and emotionally drained today,birthday chocolate bar it is.
Sometimes i say please God forgive me,i just cant today.
Who will care for my children if they get it.
Will i have the energy to make them a cake i dont know ,but i do know i will not place them into care .
Reading your post made that clear failed hubby ,i will not fail my children.
Oh by the way my sons name is Timmy too.Hubby chose his name.The nurses handed him to me and said heres
Timmy,i said oh no his name is mathew,she said oh iam sorry your husband said his name was Timmy.
I was so proud that my husband was there to be his dad.I smiled and said well i guess Timmy it is.But i insisted on
his middle name .After his grandpa he never met with HD.
Big hug to you Carla ,you are an amazing Mom.

When I read posts like this then I know why God made a small women instead of a hug strong man. I think I would seriuosly hurt someone.

This is an article about my uncle. It's so horrible the level of care that people in need receive.

[afrikaner-genocide-achives.blogspot.com]


Please keep a note of all of your concerns in writing, in case you ever need it. Especially as this is such a serious matter, you may want to consider writing a formal complaint.

Don't feel sorry for them ( the employees) it's your huge job to make sure that his needs are taken care off. No-one else is going to speak for him.

Do you have any other options for care i.e. other homes in the area? Speak to his doctor about your concerns.

I'm so glad to hear that you are visiting and surveying everything. So many people in homes don't have family that can ( for whatever reason, maybe no fault of their own) come and visit on a regular basis.
Please let me know how your are faring with this matter.

Wow that is so sad.i know that pain well they did that to my husband for 9 months,i kid you not .
I admitted a solid ,walking,talking ,50 year old man ,to get the help needed into the arms of the so called trusted
profssionals.
But to my horror ,within 3 weeks little did i know we would be fighting to keep him alive .
It has left me traumatized,and have not had a day of rest since ,Oct 27 2009.
The place he is in now didnt come without a fight ,no one wanted him.
I see him daily watch like a hawk there every move.
I question everything.They hate me.
But what the hands of these called professionals did was almost kill my husband ,but it killed me mentally.
His care is somewhat dodgy some days but for the most part cause i can go daily we meet in the middle i would say
but me take a day off NEVER.
One day i hope to see the abuse of chemical restraints and pshysical restaints be banned forever .
We are the voices of our loved ones .
My husbands abuse for 9months finally ended a nurse was fired and the other two got there jobs back.
I randomly monitor the room .and i tell them so too.
Thank you for your response. take care hugs