Tuesday, 10 November 2015

Modern Day Samaritan Woman

Update!!! Coming to Terms with 
placing Mom in a Home.

Myth versus reality of Alzheimer’s 

Previously I wrote about placing mom in a home and you can read that blog here

Since then several things have occurred. Some good, but some extremely tasteless and quite unimaginable also.

I am appealing to all my readers to please read this blog and forward to as many people as possible because despite all the wonderful things done and written about Alzheimer’s, this blog is the reality of one obscure unknown family that desperately requires real tangible assistance. I am hoping that when you read this blog you will have an idea of how traumatic and difficult it really is to care for a loved one with Alzheimer’s when there is really no tangible real assistance available. Many people have opinions as what I should or should not do but without the funds available I simply cannot do any of these things.  Please read and if you sympathise and agree please share….It’s so very important to my family and I…If you don’t agree or think I am over the top its ok to ignore…At this point I’m no longer certain what the moral high ground really is anymore. It seems to me that anyone can do as they please nowadays…

According to Google Alzheimer’s is defined as progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain. It is the commonest cause of premature senility.

Blah blah blah !!!!   There are hundreds of sites on the internet all offering advice and blog posts and I can tell you that we have read most of them.

Did you know that this is supposedly Alzheimer’s awareness month and there is even a pretty purple ribbon that is circulating on Face Book and elsewhere to create awareness?

I have soaked up all the information on the internet like a piece of parched, dry ground that hasn’t seen water for years…But all this advice has meant “diddly squat” because we were unprepared for the blend of heartlessness and indifference we were to encounter.

Secondly, the sufferer is our mother and grandmother. You know…… the person everyone usually runs to for advice and guidance and just the comfort of a hug when your life is falling apart…like My mom has Alzheimer’s and I don’t know what to do and my heart is breaking because we are losing her and we can’t save her from this”. The only problem with this scenario is the person I want to run to for comfort and advice is the very person suffering from this horrible monstrous disease.

So the next step is naturally approach the professionals. The people who have studied and who work with Alzheimer’s patients for advice and guidance. This is obviously the next step in the logical sequence of things…

Except for one minor problem. In order to obtain professional assistance one has to have a lot of money. Money, just lying around waiting for the day that it would be required. Unfortunately my family and I are not so fortunate as to have a lot of money available to just place mom and expect excellent service.

No, we had to make numerous phone calls and mail numerous e-mails. While all the time struggling to cope and manage with mom at home. Eventually our prayers were answered and we found a place willing to take mom for the amount we could afford to club together.
Oh! The relief was tangible and we were all so excited that we had managed, despite the odds against us and the months of serious struggle to find a place for mom. Even mom was excited. Somewhere in her muddled brain she understood the pressure would be off us.

However within the first three weeks we already had concerns because mom went from 


To
This


I have darkened the edges only to hide the background.
The picture has not been tampered with in any manner.

In addition she had bruises on her arms and an open sore that was oozing blood and was uncovered when we visited with her. So as concerned family members we queried this (I think all responsible persons would do the same?) and the explanation provided was the student nurses were a bit rough and had been disciplined and retrained. 


 16 August 2015

16 August 2015


23 August 2015

My mother was also moved to another facility that could provide one on one care until her sores had healed. My brother and I accepted the explanation, after all these were the professionals and we were still attempting to merely come to terms with the knowledge that we were losing mom, one painful day at a time.

In the meantime I had sent a request that my mom remained within the home. At the time I sincerely believed that it was a better facility to care for her in that it was more “hospital like” and since she remained there for two months and I received no feedback whatsoever we believed that the matter was settled and that she could remain there.

However, on the 31st of October 2015, my brother went to visit her only to find that she wasn’t there at all, and had been moved without our knowledge of consent back to the original facility. Naturally we were upset as no one had bothered to inform us.  This person is our mother…a much loved, mourned for mother…not a possession or a piece of old furniture that can be moved around just like that.

She was then transferred to a third facility on the same day and we assumed that the matter was settled since we received no further feedback whatsoever from the powers that be and our numerous calls to the facility were met with “All is in order” responses, until I made my usual “check on mom” call on Thursday, the 5th of November 2015, only to find that she had again been moved back to the original facility, again without the families knowledge or consent. Apparently, if you are not paying the full amount, the powers that be can do as they please and the family are not required to be notified.

Naturally we were indeed upset about this because not only was it a shock to us, no one had informed us and we had no idea what was going on. Why was she moved? What exactly was the problem? No one could tell us and we were instructed to consult with the owner as she made the decision. She did not answer her phone and my e-mail went unanswered.

On the 6th of November 2015, my brother and I visited with mom and the Sister on Duty did an amazing job of calming us down and explaining that mom was apparently very unmanageable at the two facilities and was therefore transferred back. Just this one afternoon of direct communication already made us both feel better and we were departed believing completely that mom was in the best care.

We had not known that mom was difficult and naturally even had we known we would have expected the facilities to manage since they claim to be professional service providers to Alzheimer’s patients. During our visit; however we were concerned as mom had significantly more bruises than previously. (Apparently this was how she looked when she arrived and the explanation provided was that it was self-inflicted due to her attempting to climb out of windows and escape under hedges). If someone had communicated this with us during our weekend visits and numerous phone calls we would certainly have made the effort to either have the doctor adjust her medication or whatever the home suggested we do. After all, we are ignorant as to what we are supposed to do in these situations and rely on the home to provide us with the education and information.


06 November 2015
Below: Bruises and sores above the area where mom had a hip replacement and femur bone repair in April 2015. Who knows what it looks like inside?






Anyhow despite these photos we still believed that mom would be alright. The Sister on duty did am amazing job of reassuring us. After all we have made our concerns known. I had also expressed my heartbreak on a site on Face Book without mentioning the facility, only to attempt to find assistance and maybe some comfort or at the very least to find advice. Advice which I desperately needed.

After all…What exactly is the right response to the above? 
Who do you speak to? 
Who even cares? 
What is the right response when you cannot pay the full amount and are at the mercy of other people more powerful and wealthier than you are who call all the shots and blatantly ignore phone calls and e-mails? 
What is the right response when you are desperately scraping your cents together every single month to ensure the care of someone you love, while doing anything and everything necessary to make sure the nappies, toiletries and medication is provided on time and ahead of time? 

I know that I am not paying an absolute fortune but for me it may as well be millions because IT IS ALL THAT I HAVE!!! What exactly is the right response?

Do we just ignore the above bruises? 

Pretend they aren’t there? 

Blame mom for trying to escape when she is suffering from Alzheimer’s. 

This is why she is there in the first place. 

Entrusted into the care of people who claim to be the professionals.  

Finally, today on the 10th of November 2015, I received the long awaited response to my e-mail only to be attacked falsely as a bad payer and complainer of all sorts of irrelevant things I had never even thought about complaining about. Anything to discredit me and my two very legitimate concerns.There was no mention of the fact that mom had been moved without our knowledge and a brief no “big deal” mention made of the aforementioned bruises, because they were ALL self-inflicted anyway, but plenty of innuendo regarding how difficult mom is and what a terrible a payer I am. I agree I am not paying the full R7000-00 to R8000-00 and again I concede that the facility kindly agreed to this. However, we are also not receiving a total charity either, whereby we are contributing nothing at all. We are paying the pre-agreed amount. 

We are paying R5000-00 in total every single month, on time and always before the 1st of every month.



In addition to the above mentioned “Rent” we supply approximately R2000-00 worth of nappies, R500-00 for medication and another ±R500-00 towards toiletries every single month without fail.

None of above is a complaint. This is done with love for mom because she deserves this. We would obviously love to do more but we are stretched beyond our means at this point. However, had the home at any time consulted with me and informed me that they were no longer satisfied with the pre-arranged agreement regarding payment, we would certainly have made every effort in order to cooperate with them. The truth is no one ever mentioned this and we were under the impression that the agreement was still in order.

Then within minutes, of receiving the above mentioned e-mail I received another e-mail from the home informing me that mom’s contract has been terminated and that I have 24 hours in which to move her out.


My reaction:


       This is merely a spiteful, extremely unprofessional move. If they who are the professionals cannot manage her because she is “such a risk to herself and others” how are we who are uneducated regarding Alzheimer’s and definitely not professional supposed to cope at home? 

After all Alzheimer’s / Dementia Care is the full Crux of their Internet Advertising. 

How then can they claim that they are not coping? 

How are they managing the other Alzheimer Patients? 

Could my mother really be the only “difficult” patient? 

Is this not the full point of their Group’ existence? 

So instead of meeting with me, discussing the matter between adults 
and cooperating with mutually supporting solutions, 

there is now a tit for tat e-mail ping pong game, 
throwing about irrelevant accusations. 

Really???

 Is this really the correct response to what I truly believe to be legitimate concerns? 

I never in any manner spoke to any staff member disrespectfully nor 
made any accusations against the facility, owners or staff members. I merely was upset because she was moved without my knowledge, surely something that could have been accomplished with one phone call and queried how she had obtained so many bruises.

Clearly, the end of the matter is we dare not complain or raise a concern. The powers that be will not stand for it and since we; the poor people have no voice or authority of any kind we have to accept everything happens without a word???

After all they are making the huge concession of permitting us to pay less. ??? 


We are certainly appreciative of the arrangement that was made and although we are not paying the full amount, we are sticking to the PRE-AGREED amount without failing to pay and definitely never late.

Really is that what this world and the world of Alzheimer’s Care Givers 
has amounted to?

The sad fact is and the end of the matter is that this is a person, a seventy-eight year old woman, lady and mother that does not deserve any of this. She did not ask to suffer from Alzheimer’s, and were she able to understand she would have been quite distressed to know that she had been the center of such a struggle. This is a creative, artistic lady that produced many beautiful drawings, stories and paintings in her time, all the while working hard and raising two children single handily. She paid her taxes and contributed to the growth in this country, in her time. 


She should be looked after and cared for and loved by her family and this is what we all expected to do willingly; however none of us foresaw the Alzheimer’s that was to follow.


Why is it so difficult to find professional assistance in this regard? As mentioned earlier this is Alzheimer’s Awareness Month. Sending pretty purple ribbons around, certainly creates a form of awareness but so much more is needed, in order to assist the families who are facing this.

As I sit here typing and reliving this all over again, worrying about what the 11th of November 2015 will bring and trusting God with a solution, because quite frankly I cannot understand any of the above. 

Is no one accountable anymore?

Does throwing an old woman out of a much needed care facility really do justice simply because the family have raised a few concerns?

Are there no more morals and simply “This is the right thing” anymore?

Does everything amount to our bank accounts and how much we can pay or better yet get out of someone else?

As I mentioned in my first blog when I placed my mom in the home “my hope lies in the fact that my Creator lives and He still has the whole world in His hands …He reaches Mom when I can’t. He protects her when I’m not there. He comforts her with His presence when she is lonely and afraid…He will provide the answers and He will not let anyone (including me) get away with mistreating another person, exploiting a situation for my own ends, or merely looking the other way just because someone does not have enough money to just hand over.”

*Hugs* till next time.

Ariéte