This is not the first time I have had to deal with a parent with mental health issues!
It’s not easy! Parents are the ones who look after you, parents are strong, parents are, well…. parents!
I am the child, I’m pushing sixty but I am still the child! They are the parents!
Dementia doesn’t give a toss who is the parent or who is the child! Dementia comes into your life like a plague, it wipes out everything! Everything you know, everything you are familiar with and everything you love!
It takes away memories and recognition!
It turns a normal mild mannered, loving and considerate human being into an abusive, violent, old person, obsessed with sex!
Well, it can do all of these things and yes, it can do other things but this is what it is doing to us!
Dementia, doesn’t give a flying duck for any of us!
The sufferer or the suffering, the family or the patient!
The Alzheimer’s Society says this:
“All types of dementia are progressive. This means that the structure and chemistry of the brain become increasingly damaged over time. The person’s ability to remember, understand, communicate and reason gradually declines.
How quickly dementia progresses depends on the individual. Each person is unique and experiences dementia in their own way.
The way people experience dementia depends on many factors, including physical make-up, emotional resilience and the support available to them.”
What I don’t understand is the speed in which it has rampaged through the mind of my elderly parent. Eight weeks ago he was poorly but his mental health was ok.
That’s ‘ok’, not perfect but ok.
A bit of background might help here.
Previously, a couple of falls had resulted in time on the floor, paramedics being called and hospitalisation. On the first occasion a UTI was diagnosed which explained the temporary confusion. Once in hospital things became decidedly worse and MPA was used to get oxygen back into his system. Short period in hospital, pacemaker fitted, back to normal.
On the second occasion another night on the floor because the heart was not behaving itself and so he was once again admitted to hospital.
I feel I must explain the ‘nights on the floor’……
Emergency call button is in place, necklace with button is worn every day and all of the family have numbers programmed into the phone! I live across the road a two minute walk.
So, why has my elderly parent on two separate occasions spent a long, cold night on the floor?
You must have heard this one before…. “I didn’t want to make a fuss love, I knew you would be over eventually”!
What can you do? What can you say? How can you counter a life time of “not making a fuss”? A life time of only call the doctor if you are really poorly, never call an ambulance unless you are on death’s door and God forbid you needed a police officer…. It would have to be a murder!
So, this is why my parent chose to spend the nights on the floor unable to get up, unable to return to the warmth of his bed and unwilling to phone his family or carer givers.
So, lets get back to the evil disease that is dementia.
In mid December we once again found ourselves on the daily roundabout that is hospital visiting.
Like the parents we are also not the sort of people who like to make a fuss.
Obvious, I suppose when you consider our upbringing.
Respect, respect, respect!
Respect for authority!
The police officer, the paramedic, the fireman, the nurse, all the 999 services were revered in our family.
Doctor knows best, never argue with the doctor just do as he tells you.
Doctor says “not fit to go home” then that’s the way it has to be! The old mantra of “they only keep you in hospital if you need to be there” is true, isn’t it?
So when Christmas came and went and the old year turned into the new and the parent was still in the hospital WE were still doing as we were told and having respect and being good children!
As we strolled into January we had no idea why things started to take a dramatic turn for the worse because there was no UTI, oh actually, yes there was a UTI and…..
The kidneys were damaged no the kidneys were fine. There were no MH issues but he is very confused and suffering from delirium with onset dementia! He is very poorly you know! Doctor says he is fit to be discharged here is the paperwork!
Oh dear me no! what makes you think he is coming home, he is a very poorly gentleman!
Sorry but you told us yesterday that……..
We had no idea if we were coming or going, one nurse told us one thing another told us something else. There was no consistency and no agreement!
Don’t get me wrong, we were asking questions and we were trying to get answers. We may be respectful but we aren’t stupid. Things weren’t right so now we took advice and we started to push a little! Big step!
No UTI, we were told! No MH issues, we were told! Bloods ok, we were told! Actually, there is nothing really wrong with him, we were told!
In the run up to Christmas we could see MH issues developing.
We would visit to be told he had been inappropriate with the nursing staff, that he had been arguing with other patients, he had thrown things, banged things and shouted aggressively. Other patients had reported to staff that he was talking nonsense and other patients told us that he was very confused.
We would visit to be told by the parent that his possessions were being stolen, that he was once again onboard ship in the engine room and that the man in the next bed was Arthur ‘such a body’ an old shipmate!
Alarm bells were beginning to ring!
They moved him into and out of a private ward twice, he had a bug! He recovered.
‘We are hoping to move him to the cottage hospital’, they said ‘but there is no bed.’
On Christmas Eve a bed was available but apparently he was too poorly to go and they would not take him with his present MH issues!
I have to say that at this point in the narrative I am confused as to which thing happened next and who said what to whom, by this point we were tearing our hair out and hadn’t a clue what was going on!
About, two weeks into December we had had a brief meeting with a registrar who told us the parent had had a memory test and had passed with flying colours and that medically there was nothing wrong with him!
So what MH issues were we talking about, here?
Our biggest worry had been that they would decide to send him home to a cold, empty house on Christmas Eve! The parent would not have wanted to stay with any of us as this was not what he did, so we sought assurances that this would not happen!
“I’m not being funny doc but its nearly Christmas and it doesn’t matter to me whether he is in or out I will deal with it but I need to prepare ONE WAY OR THE OTHER!”
A Multidisciplinary Team meeting had been suggested on several occasions but hadn’t happen. The doctor assured us that the parent would not and could not be sent home now that a MDT meeting had been called for.
So we set ourselves to wait until after Christmas.
I have to say I wasn’t convinced with his assurances and when unbeknownst to us the parent had yet another meeting with the memory nurse and she pronounced him perfectly fine and said she had no concerns we all began to worry and when a MDT meeting was suggested for Christmas Eve we said, ‘Not on your nelly!’
Long story, short…. we got through Christmas. We visited him every day, as usual. We took him presents and cards that he didn’t want and we took him a Christmas Cracker and a small homemade sherry trifle which he thoroughly enjoyed!
Lulled into a false sense of security I decided to risk Hogmanay in Scotland! Yep, you guessed it MDT meeting was arranged whilst I was away and could only be held on the 2nd January which was the day I was due to travel home on my pre booked train!
Not a problem! Let the other members of the family deal with it and if necessary I was on the mobile or Skype or FaceTime.
You can understand that by now I was having concerns about my own MH, this is not a joke. The stresses and strains of the situation were beginning to tell on me.
The ups and downs and the inconsistent messages we were receiving were hard to deal with and the parent was not himself!
My family went home together and discussed the situation, I went home on my own and opened a bottle of wine!
On top of everything out of the blue the parent who apparently had nothing wrong with him suddenly decided to deposit himself on death’s doorstep! We actually at this point thought he was a gonna!
However, as my kids keep saying he is a trooper and would you believe it he pulled through and within a few days he was back in the chair!
I can’t actually, believe that we are only three weeks into the new year as it feels like a life time has passed.
The parent’s house has been empty for weeks, the post has not been dealt with and it’s a good job the bills are all on DD as here lies another problem with our good old friend dementia! Power of Attorney! We missed the boat! Like many people we did not set this up in advance. BIG mistake! We talked about it but we didn’t do it! So when we went to see the solicitor and we told him that the parent had passed the two memory tests but that in our honest opinion he would not be able to answer simple questions like, Who is the current Prime Minister and What date is your birthday, and that there was a big MH test pending, he told us we would have to wait for the results and he made reference to The Court of Protection.
We had already Googled the Court of Protection and knew that that was a tortuous and expensive process!
So here we were, waiting!
Waiting for a move to the cottage hospital? Waiting for him to come home? Waiting for him to go into a home? Waiting for a MDT meeting?
We were just waiting.
When the meeting came it achieved nothing! At the end of it we were no further forward and still waiting.
As the days passed the MH of the parent went from bad to worse. Mostly, he knew who we all were and he asked questions about the family but there were more days now when he was making no sense at all.
There were more days when he had no idea were he was and thought he was in church, in the cinema or at work!
We didn’t know why and no one had any answers. He withdrew further and further into himself. He refused newspapers, TV and radio. He was not walking, his legs and feet were swollen. His general demeanour was morose! He was extremely inappropriate and rude to the nurses and the ladies in the family. He was irritable and irate and then he smashed the glass in his hospital door with his walking stick!
I have to say the staff were very nice about it, my personal dread was that he would do something which would result in the police being called. This would have been the worst case scenario for an old man who had aways been a hard working, law abiding citizen. A man whose uncle and son-in-law had both been police officers.
I had seen police officers sitting outside a room of an elderly patient and I had wondered what the story was. What would they do? What could they do? Restrain him? Arrest him? He may have been weak in his mind but as the nurses kept saying, “He is a very strong man!” So, I was terrified!
The situation was however, calmed by the nursing staff and all respect to them, so when I visited on the Sunday the only evidence of the violent outburst was the boarded up window and the parent had no memory of it!
On the Monday they moved him to the cottage hospital!
On the first night he was inappropriate to two nurses and he started to shout, loudly.
They let him sleep in a chair in the lounge and when we visited the next day they complained that they hadn’t been fully informed regarding his MH issues!
He’s been there a week, now.
He has no memory of his stay in hospital, he doesn’t know where he is!
He calls constantly for his wife who has been dead for five years!
He has fallen out of bed and has a lump on his head and a black eye!
He cannot walk and he has a catheter fitted!
His hands and feet are swollen!
He keeps his eyes closed and he cannot make conversation!
He stands up and sits down again.
He calls on The Lord for help and he shouts at God because of his ailments!
He does not know who any of us are!
Tomorrow, at 10.30 am we have a MDT meeting…………
This afternoon I asked him a question.
“Do you know who I am, Dad?”
“No, love! I have no idea who you are!”