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zonk · 01-11-2007, 02:39 AM

we had respite for 2 weeks recently, and during that time mums principal carer (my brother) proceeded to have a nervous breakdown, he hasnt had a paid job for at least 15years
(alcohol and other drug abuse)
things have now escalated to the point where he has been ringing me claiming that he "wont be responsible for his own actions"
he was yesterday prescribed valium...
this is my mums principal carer???!!!
i need to work to support my own family
so I have made a permanent NH placement my top priority...for mums safety obviously
secured a bed today,signing away the inheritance tomorrow, but it really doestnt matter, when the principal carer is having a nervous breakdown and on valium and apparantly addicted to whatever else
mum will be admitted early next week.
Martha, you have given me the courage to do this,you have made a difference to my familys life, and my mums safety as you have mentioned is the no. 1 priority
so no more worries about mums wellbeing

Angel bear(S), you have helped me through one of the most difficult times in my life, if you could do what you did, I can do ANYTHING
this is rather stressful but as we entered the lockdown unit today some poor little old lady approached my DH and said"have you come to take me home?"
I know mum will ask me that...other forum members have been through that (perhaps Jess I think)
its going to get worse than this...but surely permanent placement in a lockdown unit is about as stressful as it can get.....
but i need to know..is the stress going to escalate?
My dad died of a brain tumour(inoperable) with 11 days from diagnosis to death..that was one hundred fold worse than this
from what I have read the worst is yet to come.
surely permanent placement relieves some of the stress?
goodbye to my mum as she was, may she be reuinited with Ron (my dad) as soon as possible
may she please be calm and secure until her body no longer functions, may I provide her with care that gives her physical and emotional comfort
May I be strong in her confusion,anxiety and fear.
May we all continue to learn love and care.
as always
Kind Regards,
Jo

Martha H · 01-11-2007, 03:12 AM

Dear Jo,

It humbles me to think that my exeriences with Mom can help someone else, but that is why I am here - I keep coming back in the hope that someone will benefit from what I went through. Angel Bear feels the same way.

Yes, it gets better - once your Mum is placed and you have confidence that she is in a good place, your life gets back on track.

I am sorry your brother has had a nervous breakdown and I pray he will recover and get back to a good life.

You are doing the right thng.

love,

Martha

angel_bear · 01-11-2007, 04:48 AM

Oh Zonk ... I'm glad I've helped you in some small way .. I am truly honoured and I thank you.

You are doing the best thing you can for your Mum. No regrets my friend, this is what needs to be done. If circumstances change, you could always reverse your decision, but let me tell you ... you've made the right one for right now at this moment of time ok?

I know SO many people who have been admitted to facilities, and even I think "Gee, you could have stayed at home a bit longer" but it's not for me to judge, I don't know all the facts,and that was really brought home this past week to me by one lady I know who has just been admitted whom we ALL thought was really quite 'with it' and is, quite evidently 'NOT WITH IT' and after much talking with her daughter, helped her realise that Mum NEEDS a secure unit. She's SAFE.

Anyway, we're here for a virtual hug, to listen to some venting and to just be here.

Hugs

zonk · 01-12-2007, 03:01 AM

this is my greatest concern, could we have kept her home longer?

that was my no. 1 aim.
But given the circumstances it is now in mums best interest to be permanently placed, even if it causes her some distress.
Better to place her now than to risk my brother hurting her (psychologically) or walking out on her and being faced with a crisis.
and my brothers health is suffering (obviously)
I fear judgement from health professionals about placing too early but as you point out, each person never knows the family situation.
I have not told our NH that my brother is on valium and having addiction problems, but I will in due course.
I am hoping that once she is admitted they will not find it necessary to keep her in the secure wing, and that she can be transferred to the general high care ward...time will tell.(ACAT specified dementia specific)
she has no challenging behaviours, is not aggressive, and does not wander or sundown and is a bit repetitive
i take her in on Monday, and then I will get my life back,gradually!
Angel bear, I just read your 101 activities for an alzheimers patients and I was a bit shocked because my mum seems a bit different from other typical sufferers (or maybe its the stage)
I dont think she could actually do up to 85% of your suggestions
she is not capable of getting a glass of water in her own home
she certainly could not color in, rake, fold towels, do simple puzzles or talk about "the old times"
she is hardly capable of putting together a 5 word sentence. she could not wipe a table or sort socks
in fact the only things she can do unaided are go to the toilet (needs help at times) walk and eat.dressing is dodgy.
I once(about six months ago) tried to get her to get something out of my pantry. I gave her simple one step directions but I could not even get her to find or see the cupboard which was right next to her(yes we have had a recent visit to the optomitrist) sp?
a little while ago I tried to get her to brush her hair, I put the brush in her hand and gave her one step directions and even touched her hand and then her hair giving her not only verbal but physical instructions..."time to brush your hair"
success....NIL.
when she follows me to the toilet in my house, if I dissapear around the corner,less than 2 feet away from her she does not follow,as she has lost sight of me but starts anxiously repeating "where am I? where am I?!, WHERE AM I??!!
but she is continent, mobile and has a good appetite.
its like the disease has totally attacked the part of her brain that regulates these functions before it turns its attention to the part of her brain that governs the body.

I class her as stage six going by your sticky, I can not see room for any more cognitive decline that will not involve her physically

Martha, if you read this post, I must say I dont know what you do professionally, I suspect you are retired, but you should be a councellor (sp)you have a natural empathy and offer realistic and sound advice for those in crisis.
I have kept myself informed of your mums progress and you have
"life experiences" that make you a trustworthy and wise person.

feedback regarding my mums probable progression or your assessment re: what stage she is at would be appreciated as I fear my judgement may be clouded at this time

kind regards,
Jo...who is feeling a little less stressed today than y/day

I love to VENT, my friends and family no doubt are very tired of my only topic of conversation being alzheimers and my mum
by the way...on monday arvo after her permanent admittance, I am going to sit in my garden with a nice glass of white wine and a good book..luv reading!
I have through all this not forgotten to look after me too!
(well maybe I did for a little while

I have even booked myself in with my GP for the following mon for a long overdue visit... I should have gone 2 years ago
I have every mon off work, so the following Mon I might go to the hairdressers...oh joy, oh bliss...gee maybe I will even go to the cinema or out for a meal...sounds good huh?

I could even do some gardening or shopping
hmmmmm....choices choices
perhaps i could......see my friends!
oh, here`s a thought, I could actually give some time and attention to my DH and my children
the possibilities are endless, who would have thought???

i am after all, still only 42 years young

Martha H · 01-12-2007, 03:32 AM

Dear Jo,

Your description of what your Mother can and cannot do makes it chrystal clear that she is READY for a nursing home, and no one in their right mind would say it is 'too early!" Many of the patients in my Mom's nursing home are way more self sufficient than that!

I am a retired teacher. I worked mainly with preschool children but I have also taught English as a foreign language when I lived in Germany, and elementary school up to grade 5. I now teach 6 year olds in a Sunday School class, but outside of that I only mind my 4 and 7 year old grandsons who live near me (that's why I moved to Indiana) on days when both parents work. That's about 2.5 days a week.

I am looking forward to your reports on how your Mum adjusts to the NH and how YOU enjoy more time for your own family ...

Love,

Martha

angel_bear · 01-12-2007, 04:37 AM

Zonk

Don't be surprised if Mum 'improves' when she's first placed or even 'digresses' even further .. its to be expected.

I must tell you, many of my clients can't do any of the 101 activities suggested, however, many just like to sit and hold hands. Many like a hand massage. Many like just a touch .. skin to skin. That is enough activity for them. Like I said, everybody is unique and everybody must be treated as an individual even though they have a similar disease that runs along similar lines. That being said, the clients I say may have been placed to early can't do many of these activities. I have one lady who is quite capable of ironing, but can no longer set a table for dinner.

"Go figure"

another lady can fold clothes over and over and over again, perfectly without a crease, but cannot figure out how to turn the page of a newspaper let alone cut a coupon out!! (oh, and I add, we're not going to let them loose with scissors LOL)

You are doing the right thing, and you are doing the righter thing by organising YOU time .. read that book, go for that walk, GET THAT CHECKUP (funny, that's the first thing I did when we placed our final charge)

And on the honesty stakes :

The professionals will NOT judge you because:

a) Mum will be paying to stay
b) The more needy she is, the more funding they get
c) The sooner she is placed and assessed, with each assessment (dementia can be assessed every 6 weeks, 2 months or as needed because things can change so quickly) they can get more funding (Mum won't pay any more, it's a government thing).

They'll NEVER knock somebody back unless it's because there is somebody more needy.

Just give her time to settle in. Let the facility know EVERYTHING. Do you want brother taking her out for drives? Who can or can't see her/take her out. Are they going to supply toiletries?

Oh .. get everything labelled, and I truly mean absolutely everything. Watches, jewellery, photo's, shoes, socks, stockings, slippers, nighties, undies, bra's, singlets, necklaces, glasses, teeth (dentists usually label them free or cheap), rings ... if it's going, make sure it's got a non-removeable name on it !! Other residents can and do wander into rooms and pilfer stuff (there goes that whole society/etiquette thing we learnt from a young age).

Goodluck .. :-)

(and yeah .. Martha should be a counsellor eh?)

Hugs

zonk · 01-12-2007, 03:45 PM

Thanks for that good advice....I have already been into the labelling thing with the respite care prior to christmas
this particular NH will label everything that I havent already.
I have been warned about other residents "taking a liking" to others possessions
my mum doesnt really use toiletries anymore, just a toothbrush and hairbrush (well not anymore for the hairbrush!)
when she had shingles my brother caught her trying to put hairspray on her rash, I caught her trying to do the same thing with liquid soap
we soon got rid of non essential toiletries.

a friend of mine is a nurse who works through an nursing agency that supplies staff to NH in our area and has been a great help when it comes to "details"
I worry so much over details I even had a nightmare involving a commercial laundry with socks floating everywhere in the room - the unlabelled socks were aggressive and not happy- go figure!

can you please explain what you mean by the following -

b) The more needy she is, the more funding they get
c) The sooner she is placed and assessed, with each assessment (dementia can be assessed every 6 weeks, 2 months or as needed because things can change so quickly) they can get more funding (Mum won't pay any more, it's a government thing).

b) more needy in what way? apart from incontinence aids, why would they get more funding?

c) assessment by whom? the GP?
on what basis would they get more funding?
thanks again for sharing your experience and knowledge
Jo

angel_bear · 01-13-2007, 03:24 AM

Unfortunately, Aged Care is also a business. And business's, even if advertised as non-profit still need to 'make ends meet' ...

Now .. Mum enters a NH on an ACAT assessment. It's really only a preliminary assessment because the NH needs to assess Mum for themselves. the ACAT assessment is needed to basically say she needs professional assistance. The NH takes it from there. Whn it comes to "Activities of Daily Living" (ADL's), we need to know everything.

If she's incontinent, they get funding for incontinence aids. That also includes more nursing hours required. A 3 day continence assessment will be done on Mum ASAP at the NH. Is Mum continent if she has a good toileting program? (I know of residents who are fully incontinent on placement, but after a toileting schedule is introduced, are quite continent). Does Mum need prompting to toilet? Or is she in incontinence aids 24/7? It all takes nursing hours to check pads, sit on a toilet, dress / undress ...

If she's a wanderer, she'll need more nursing hours to superise/assist. A behaviour chart over a one week period will be commenced ASAP to see how much assistance is actually required.

Does she need her food cut up? That takes nursing hours. Does she need to be prompted to use cutlery? That takes nursing hours. Does she need to be fed? That takes nursing hours. The more needy she is, the more nursing hours are needed, the more funding they will get.

Does she need assistance in showering? If so, how? Does she need prompting? Can she do it herself? Do you have to do it for her? It all add's up to more nursing hours required.

Does she need assistance in getting dressed? If so, how much? It takes nursing hours ! Does she require reassurance and comforting? It takes nursing hours. Does she sleep? A sleep assessment will also be done.

As she deteriorates, again, that takes more nursing hours. Hence, more funding. So with every decline, an assessment will be done, as will her RCS (that's her 'level' of care kind of thing = funding). You will find the NH will have regular Case Conferences where you, the GP the NH and the nursing staff will sit down and hash out any problems or requirements and of course that will show any further needs .. and so assessments are done again and voila ... more funding!!! LOL

This is the stuff they DON'T tell you, this is the behind the scenes stuff, the business side. Sorry f I've been blunt and graphic .. but it's the facts.

Hope I've made it a little clearer for you.

Cheers

zonk · 01-13-2007, 06:43 PM

thanks for clarifying that.
the more I know, the better I will deal with this whole thing.
my friend has already explained the "business" side of nursing homes to me because she actually owned and operated one for quite a few years.
she also explained how "waiting lists" dont necesarily mean that when you get to the number one position you are offered a bed...it can depend on your "suitability"

I just didnt realise the government increased their funding to the NH as mums need for extra care increased.
I have mum on the waiting list at 2 really good places with dem specific wings (non bonded) but as my brother can no longer cope and they are yet to offer us a bed, I have had to find a vacancy ..FAST
The vacancy I found is, of course, with a NH that offers extra services
and is therefore a bonded vacancy
I will consider moving mum , when and if either of the others offer us a bed
well, wish me luck for tomorrow as its Mums last day at home today....she just doesnt know it

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