HD Australia

Hi all,

Well I though I would ask the age old question, "know of any good Nursing Homes?"
We are currently in the process of looking for a home, well we have been for the last 6-12months, but are not having much luck.

I've found one place and mum is on the waiting list there, but we have looked at probably 15 so far and they are not getting any better. I know I have to put her on a few waiting list, but as most of you would know it's such a difficult process.

Mum has been assessed as low care and concessional bed, which makes it even harder.

I'm not sure if we are allowed to 'name and shame' on this blog, but it would be good to know of some good places and some not so good.
We live in northern Melbourne and I'm willing to drive as long as the place provides good care.

What do you all think? Any suggestions?

Cheers,
Mel

Mel&Em,

The main place for HD people is Arthur Preston but I'm not sure at what stage they take patients, this is something to discuss with your Dr. Her name could always be put on the list and when it comes up, if she's not ready to go there yet, then it can go to the next person.

Our Case Worker from BSL found the one Anthony is in, but they don't understand the disease and don't cope too well with him. However they do like him, treat him fairly well and let me have meals with him, allow the dog there as long as it is in his room or outside, plus it is close to home.

It would be difficult to find anywhere that understands the disease I imagine, have you a Case Worker and a package that your Mum is under? Usually you get a package which is funded and allows the HD person to have a carer, outings etc.

Try the Dr or Huntington's Victoria and speak to them about it too, they may be able to help you out with NH.


Buddybird

Hi Debbie,

Thanks for your reply. I've heard about Arthur Preston but I've always assumed they just select the patients with the most needs, eg someone with HD and other issues on top of that.
I've read some of your posts on the Nursing Home your husband is in and it scared me a bit, especially the bit about chocolates being hidden from him. I know I'm very happy when mum eats, she has her phases when she eats nothing, so when I find something that she likes I don't care whether its sweet, sour or something friend, anything to get her calorie intake up.

I've spoken to HD Vic, they provided me with the list of NH we have visited so far.
A few were really great, but the concessional bed always comes up as an issue, also mum is a smoker so that always poses another issue.
Hopefully we'll find some more, but it's not looking promising anymore.

To answer your question, yes she does have government funding for a carer to visit her, but we've had some issues with that as well, she smokes inside the house so no carer (due to occupational health & safety issues) can come to visit her. We need someone that can establish a bond with her and once that has happened I'm sure she will go on outings with them and the smoking won't be an issue. But until that bond has been created I doubt she will leave the house and hence why the smoking is an issue.

Speak soon,
Mel

Gosh sometimes i reckon finding appropriate nursing homes, keeping your place, and helping staff understand HD, is one of the hardest parts of this whole disease. It gets me a bit fired up that people have to deal with this 'care' issue on top of everything else. The availability of good care would make such a difference to everyone involved.

I would ask about the Arthur Preston unit...I cant help specifically around NHs in Melb...but after 9 years of mum being in a NH ive given up trying to fight for everything she needs, its been a long hard slog trying to get her appropriate care. I always say to myself that they provide the "care" and we provide the love/fun/good times... and all that kinda stuff. I have lots of sadness around what I would have liked her care to have been....but ive just had to accept that it was all we had to work with at the time, and we did the best we could with that.

I hope you can find something that's close to you guys, and is flexible in how they offer services. I know its really really hard. You guys deserve good care for your mum and the time out for you...so I really hope something comes along soon that you feel comfortable with.

Do you feel her assessment was accurate for low care?

Michelle xx

Mel don't be scared off what I've said, they treat him so well. He is happy there and the outside workers keep in touch with the staff so don't think he is treated badly. He has a box of unopened chocolates in his drawer so they aren't hiding them, just want him to watch what he eats as he will and always has eaten so much until he feels sick. Same with his beer back in the old days.

His is an SRS - Supported Residential Service so he can come and go as he pleases as long as he is with someone. He gets good meals there so I hope I haven't given you the impression he isn't looked after. They do everything for him, toileting etc.

Maybe their worry is that if he eats too much he won't know when to stop and could make himself sick. I will ask if I'm brave enough or maybe ask the Case Worker first. The lady who is on Saturday night is very business like, not much of a sense of humour.

He sits out with the others and listens to music when he's there, as soon as you walk in the door there he is in the chair. When he registers it's me he comes over for a hug.

Don't let me put you off, it might be different in some places but find a place where they are willing to learn about HD and have information given to them so they can help rather than hinder. Maybe get a list and go over it with your Drs - they would be familiar with some and help you out.

All the best

Buddybird

Hi guys,

Sorry I haven't replied for a while, but I went off and contacted every Nursing Home I could find on the Aged Care Guide within our area.
Anyway I feel like I am abusing the forum at the moment as I am not contributing much at the moment but keep asking questions. Hopefully once things settle down I can contribute a bit more again.
Anyway we have found a Nursing Home and mum will be moving in next week Monday for a 1 month trial with the aim of her staying there permanently(fingerscrossed)
I just wanted to ask how you guys dealt with the move issue? We have decided not to tell mum until Monday when we take her, I know most people say this is mean and will only confuse her more, but we don't know what else to do, she says and thinks she is just fine and nothing is wrong with her.
What I want to know is, how often did you visit? Some people have advised us not to visit her at all for the first two/four weeks to give her a chance to settle in, but this is abandoning her.
Also any specific things I should remember to tell the staff there.
Should I take her home for weekend leave during this 1 month trial?
Should we still take her out for outings? I'm scared she will refuse to go back and I don't want to have to call the ambulance/police like we have prior when she has gone into a Hospital.
Any other suggestions you guys can think of that will help?

Thanks a million,
Mel

Mel, I would get in touch with Jimmy Pollard - he knows all this kind of stuff and is very easy to talk to. He is a member on this forum, but might be an idea to send him a private message or email. He has written a couple of books that might help you out too, and especially useful to give to the nursing home to give them a head start - 'Hurry Up and Wait' and also not sure what it is called but 'Caregivers guide to middle to advanced stages of Huntingtons' (I think). Michelle would certainly know the best way to contact Jimmy, but his email address is listed on this forum somewhere if you do a search. All the best, Shy

Hi guys, I'm so sorry for the hard time you have been through, It's so hard to make this decision, we had to do this for my brother Andy twice as the first place he went to for low level care told us they could look after him into high level care , They lied. When he had a bad fall & he couldn't walk very well they changed their minds. So off we went again on the search, but high level now. The place we decided on was Regis Macleod, Now Regis Heathcliff manor because they have a new flashy part for those who can pay into that. Andy was in the old part, not so flash looking as where he was but the staff & care he has had was amazing. They have dealt with HD patients before & in far worse condition than Andy. I must also add that Andy was always happy & cheerful & very nosey wanting to know the personal life of all the staff & visitors. He made our lives so much easier because of his disposition, I've read lots of stories on this forum & other places about Hd & other siblings & know everyone aren't so easy going.


If there is anything I can tell you that might be helpful please just ask or private email me & I will give you my phone number & we can have a chat. Love & good wishes Jan

Hey Mel...Here is Jimmys email..im sure he would be more than happy for you to ask him a few questions. Jimmy works in a nursing home in the US and does alot of training for NH staff and families around the issue of care. jjpollard@comcast.net Im not sure if he will get to you by Monday though.
Also another option if you would like more views and more opinions, post your question on http://www.hdac.org/phorum/list.php?5

Mel I don't think there is any one way to do this...or any easy way. You know your mums past experiences better than anyone so you probably know what will work best for her in this situation (if that best way even exists! )...It does seem like Monday is going to be a huge shock to her, but im sure you have made that decision out of love and care...and past experiences with your mum.
Do you have someone helping you on Monday?

My mum knew she was going in to the NH and we had a meeting with a social worker. Mum had been to the nursing home for respite, so she knew the place and some of the nurses. And she actually coped well in the start. We visited her every week, she went to her church meetings on the sundays and we took her out for outings. Its hard to remember if we did this straight away or waited a while. I guess the main thing was to try and keep it routine. The last few years have been the hardest because bringing her out has often caused chaos with her not wanting to go back...I always hesitated at not bringing her out because of this, because of how much she loves and looks forward to getting out. But it is very hard at times.
So I guess its also thinking about the impact of your mums reaction on you and whether your ready for that just yet, in amongst everything else.

Id be careful what you set yourself up to do. I mean maybe think about how much you want to do for your mums care and start this routine. If you want to visit once a week, maybe start that from week one. Maybe leave the outing for a while to let her fully settle in but i wouldn't "not visit" I agree she may feel abandoned, especially when you have been her main carer. I would be calling every now and again, just to make sure she is going ok. (although it may be that they will be calling you! )

This is huge for you guys Mel...you've cared for your mum for years. Your passing this onto someone else, of course you want to check in and make sure she is ok. Your mum is vulnerable...I know sometimes i feel like my mum is my child (and i mean that in a loving way)...i want to make sure she is ok...i dont want her to be sad...i like to know what she did in the day... It makes me feel more settled knowing she is ok...or not ok and needs help. But at least I know.  

Your mum will settle in...it might take some time but it will happen. This is going to be a hard week for you guys...so take good care of yourself, Ill be thinking of you xx

Hey Mel,


Firstly don’t appologise for not posting,we are a support network for each other and its hear to use as you need to
Goodness knows Ive totally sucked for over 12mths, lol.

When mum first went into a Nursing home,they really had no idea how to care for mum and it was concerning to think shewas in a place where almost none of them had ever cared for a HD patient. Mumhas her own room, which I think helps being away from all the “older” people inthere (she doesn’t like them much, lol) After her being in there for 5 years Ilook back and I think, yes maybe they didn’t give her the care she needed but anursing home, no matter which one you pick it is never going to completely meetall the needs of a younger person, that isn’t what a nursing home is set up todo.

They have done lots of things we haven’tagreed on and have had some arguments, discussions and tears, but the realityof it is that you have these things even within your own family. When you aredealing with a loved one and you feel really strongly about something you willfight for it, regardless if it is between the nurse, doctor or family member. Ithink the thing I don’t give credit to the nursing home is that they will trynew things (even if I think the idea totally sucks, lol) but this is showingthat they really are trying to offer her the best care possible with theresources and availability of staff they have. There are always going to be thecarrying and loving nurses as well as the nasty ones, but we are faced withthose kinds of people anywhere.

I laughed at Debbie saying about thechocolates, my mum absolutely loves sweets so much so that we ended up givingher diabetes, we always laugh and say we are killing her with love. Its hardthough cos for me I think, who cares she has nothing else to look forward to sojust let her have it, but I can see the nurses point of view if somethinghappens to mum they are liable.

My dad went everyday to visit mum foralmost 4years and would feed her lunch, change her, help with her washes etc.As he had done this right from the start, the nurses started to expect him todo it. Which meant if I went in they also expected me to feed her and changeher, which is fine for them to presume I can do it. But if I was already havinga really low day the last thing I wanted to do was change my mum’s nappy. So Ithink you really need to decide right from the start what you happy to do. Dadstill visits her a few times a week, but I think mum really notices thedifference after being used to seeing him everyday. You have to make a routinethat suits you and remember that this could go on for a very long time, so youdon’t want to burn yourself out. I visit mum once a week now on the weekend andif Im up to it I might go twice. (which at first I felt slack, but I only seemy dad and parents in-law probably once a fortnight, so its in balance to therest of my life). Its amazing how sometimes it is really draining at thethought of going in to see her (I know that sounds aweful and I love my mum topieces, but sometimes its really hard to go in there and put on a happy face, eventhough I can usually do it). So I just take each visit as it comes and I knowwithin myself now what my limits are and I try not to cross them, so that I amable to cope with the situation.

Man I’ve really gone on a lot, lol. Sorry Ihope that that makes sense without sounding aweful.

I really hope that everything goes well onMonday, just keep in mind that the Nursing home isn’t going to know everythingand they will need your help. I think it took them at least 6mths to startadjusting to mum, so a month trial isn’t very long. Go in there with thethought that it is going to work so that you have a positive frame of mind andif you aren’t happy with something speak up straight away, because this will bea learning kerb for them too. I think HD would be frustrating for the nursestoo in the fact that everything they have ever learnt to do in particularsituations is a totally different ball game when it comes to a HD patient.

Best wishes and we are all here for you

xxx

Hi Mel.

I am guessing you have moved your Mum now so am wondering how the move into the NH went. It is a difficult thing to do but it will certainly take the strain from you and she will also get the professional help that she needs.

Firstly I would definitely not put off visiting her during her trial stay, she will want to see you for that assurance that you are around and you will want to keep an eye on what is happening there and how she is being treated. If she cries and wants to come back to you I would say this is normal and you can reassure her that she needs to get the best care possible and this place looks like they can do all that so you and her can spend the fun times together without the worries of whether she is comfortable or not.

I wouldn't be so keen to take her out and bring her home because you could have trouble getting her back, she might also think she is home for good - I'm saying this because I don't know you Mum or her reaction to things, or where she is at with the HD. The last thing you want is her to refuse to go back and I have a friend who has had this trouble with her husband refusing to go back and it took 2 hours to get him out of the car and into his facility. Don't be put in this position as it will not only upset her but will upset you.

Sorry I scared you with what I said, there have been big changes ready in place since Monday when we went to the Neurologist. Anthony has stated he isn't happy with his facility, we are unhappy about him eating alone in his room because not only is it dangerous, it is also isolating for him to be removed from other people during meals.

Also the Case Worker is looking at placement across the road from where he is to another facility where they have 2 HD patients already there long term and one of them Anthony knows from Fridays activities. It is cheaper and they seem to deal with HD better if these other patients are happy. There may not be a place but I will go with the Case Worker to have a look at the place, new owners took it over recently and it was the original place Anthony was going to but was about to close down. Thankfully that didn't happen.

Anthony's name will be put down for Arthur Preston which the Neuro didn't want to do while Bailey was alive as he says it is over an hours drive from home - everyone else tells me it is 40mins. They have great activities there and even took some patients to Qld to swim with the dolphins. Staff are HD trained, the Neurologist is on the board I understand and he goes there every 3 months to see his patients there. In the meantime Anthony is having some respite in hospital later this month - the day before Bailey's anniversary he goes in so I won't even have Anthony around on Mothers' Day which I dread this year. Might just make it a doona day, sleep the day away.

Anyway let us know how you went, sorry I haven't replied for ages but couldn't logon and I just posted a long long post and it disappeared on me so hope this one goes through.

All the best


Buddybird

Hi everybody,


Thanks for your support

Shy- thanks for reminding me about the book, I actually have one, but I'm only half way through it-I'm trying to do the activities as suggested in the book to get a better understanding and well let's say it's difficult, but I've grabed the book out again and will just skip to the necessary parts for now until I have some time to read it front to back.

Jan-I will take you up on the offer and will contact you. What you experiencedwith the first Nursing Home is my worst nightmare, what if they don't accept mum after the 1 month trial and find they can't cope..but no need to worry about things that haven't happened yet.

Michelle-thanks for your encouraging words, i guess you are right, consistency from the start will have to be the way to go..I've started telling her that we need to move out as the landlord is kicking us out..she says 'ok', then changes her mind and says 'we dont have to go anywhere', I realised as you said that it would be too big of a shock for her..so I'm trying to ease her into it, but i still can't say, 'you are going into a Nursing Home". I'll make sure to email Jimmy, the "Hurry up and Wait" book has already helped me with a few issues, didn't realise it covered so much.

Nay-thanks for your side of the story, I think it's very important to know thatmaybe visiting too often at the start is not always going to be the best idea,I will try and make sure we let the nurses do their side of the job, and us dothe tasks we are prepared to do

Buddybird-It's this coming Monday, so fingers still crossed. Yes your experience did scare me a bit, but at least I know that these things can happen, at least I'm prepared. I think you are quiet right about not bringing her home, you are right with the way mum is, she would assume that she is back for good and this would only cause more problems. I guess I'll wait for a while and reasses the situation. Arthur Preston sounds really great, I really hope you have some luck and will be able to place him there. fingers crossed for you both, you've been through so much and deserve not to have to stress about Anthony's care. God when is the stress every going to stop?

Anyway I guess it will be very different & difficult, but it's the right step for all of us.

Fingers still crossed it goes reasonably well.
I'll keep you posted.

Thanks for all your support,
Mel

Mel, i just wanted to wish you all the best for tomorrow. i hope it all goes smoothly, and the landlord isn't too harsh when he kicks you all out .

Make some time to do something for yourself tomorrow, once your mums settled in...take good care of you!
I'll be thinking of you
Michelle xx

Mel just wondered how you were going?
Hows your mum going in the nursing home?

I hope we haven't heard from you because your out enjoying a little bit of freedom!

Hi everyone,

Yes, I have been enjoying my freedom, but mostly I've been lazy.
Mum is doing really well, after about 10 days she just settled in and doesn't ask to go home anymore. I really still can't believe it, it's all become so easy, I'm just waiting for things to go bad, its been 6-7weeks. Fingers crossed it continues that way..
At the moment we are visiting mum 5-6 days a week, during the weekend we both go there, weekdays we alternate.

Hope everyone is well,
Mel