Changing – Havin a Chat

Pop and Mum Penguin (PP & MP) report.

I share because it helps me in a way and some of you have been asking about them and also K.

So… PP saw a new Neurologist and the results came back yesterday. He has a form of Parkinson’s which is called MSA Multiple Systems Atrophy – a rare form of Parkinson’s.

http://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/basics/symptoms/con-20027096

I’m on my IPad so not sure if the link will actually work, for those who want to read further about it. The prognosis, needless to say isn’t good. Pop will deteriorate, as this disease affects the brain and spinal cord. His movement (which is now severely limited) will become worse. This disease will affect not only his walking, which he can barely do now, but also his muscles, his speech, his swallowing, amongst a list of other issues. Five in every 100,000 people are afflicted.

We don’t know how long he has actually had MSA but life span is approximately 7 years from diagnosis.

I cried last night reading up about it, medication will ‘help’ but not cure. I know being 88 he as they say has had a ‘good innings’, but it doesn’t make this any easier. We just have to make him as comfortable as possible and hope he doesn’t suffer too much in the time to come. He told me the other day, whilst I was pushing him in his wheelchair to their room, “I’m over all of this Ginger’ – I replied, “I know Pop and if you want to go, go… We will be o..k”.

Giving your parent, the one that you love so much, approval to just let go is heartbreaking, but I needed him to know.

MP is pretty much the same. There are the days of being cognitive and ok in her world, then there are the others.
At the moment she does not want to be showered regularly. Her hair is sticking to her head. Because of refusing to have it washed. I have asked her so many times, but she insists its not dirty…what can you do…

K is dating (men from the dating Internet site) it’s hard to keep up. She is stronger, but her memory has a bit to go before she is stable enough to look for work (which she can’t do till December). I got her to volunteer at an Aged Care Home, close to us. She has been once in 2 weeks, sadly getting her motivated is a huge task. Even getting out of bed in the morning. I knock on her bedroom door at 9, sometimes it 10.30 or later before she emerges. 😔 I have to give her, her medications daily or she’ll forget. It is like she is 9 again and mum comes to the rescue…that’s the role of a mum isn’t it?

Me? Well I’m doing alright considering. I had a tooth play up last week, the cold drink that sends you through the roof. I knew then the nerve was dying, so yesterday off to a new dentist and had it extracted (4 injections later). Luckily it was right at the back, as I refuse to look like Ma or Pa Kettle!

Services, I have done 93 and yes the wedding is on the 25th…the days are going too fast.

Thanks for reading..listening.
Hope all is well in your world.
x

Update on my Penguins (quite a lengthy piece – Part 1)

The last few poems I have written about have concerned my family.

My family, especially my parents have become part of your live’s in a distant way. The ups, the downs and in-betweens of their life, have to you, my readers in a small way become yours.

As you know Pop (my dad) is quite feeble. Somedays, thankfully, he can pull himself up off his chair, or walk to the front door unaided, but usually with the help of a walker. He has the new seat on the toilet that is like a chair, so that he does not call out to mum for aid to get up. He has the hospital pull-up post on his bed, so that he may get in and out of bed more easily and he has the rails and seat in the shower.

A recliner chair that also tilts forward helps him plant his feet on the ground and be in an almost standing position for him to get up.  A chair with arms, so that he can pull himself up after eating.

I didn’t think these days would come, not when I was young, not when I saw him play shuttle-cock with us, not when I saw him public speaking with a strong, confidant voice, not when I saw him dance with mum across the floor.

How our lives change ~ now I watch him struggle, his voice on days grow weak. Thankfully there are good days, where he jokes and laughs and says that he’s doing okay.

Mum as you know is slipping slowly. We took her to the Specialist last week (a Geriatrician) to be assessed for Dementia. My brother P and I walked in with her and sat down. It was a battle to get her there, the phone call I received the night before and the morning of was “I’m not going to see him – I don’t need to – you aren’t my doctor, they just want to get more money out of us”. One of those phone calls she got angry and hung up on me.

“Now why are you here” he asked warmly.
“Because they said I have to come”.
I told him – “This won’t be easy”. Mum was almost child-like in her responses.
When he asked “What is your birthday and how was your child-hood”.
She replied with the correct date, but then “What on earth do you want to know that for!”
Her stubborn pants were on.
My brother and I were asked to leave the room and fill out 2 pages of certain behavioural aspects now, compared to 10 years ago.
After we had finished we went back in and we had to say in front of mum, why we believe she should be there…. that was tough and the Doctor said to mum “Now don’t get angry with them, but I have to ask a few questions”.
We explained as tactfully as we could, our reasons.
He then ordered an MRI and to make a further appointment, once this had been done.
All the way home mum in the back seat kept saying “I don’t need this MRI – nothing is wrong with me”.
Yesterday I went round and asked her if I could tidy one of her grocery cupboards (pantry) she said “Yes, but I must see what you want to throw away”.
I agreed.
Pops said he has been trying to get her to tidy/sort it out for years.
“Mum the use by date on this is 2004 – can I throw?”
“What is it?”
“Mum it’s 2004”.
Much thought and pulling of faces.
“Ok I guess so…”
This went on for over an hour. Me asking, her refuting the dates and that they were still fit for human consumption.

Empty jars, herb/spice bottles, plastic containers…. “No I want to keep them”
It went on and on, she was getting angrier, all of these meant something to her..something she could hold on to..like her past.

We got through it without her grabbing Pops walking stick and threatening me with it, as she did the other week. This gentle, kind and warm woman – slowly becoming a different person… a different mum.

Times are a changing – the road won’t be concreted nor smooth, but a rocky path, we now wait till the MRI appointment.

If you got through all of this – thank you for reading.

 

Update on Pop and Mum

Pop and I made the decision to put his beloved car (a Toyota Camry 2005) up for sale. I placed the photo and description on the web car site Monday night. Yesterday (Friday) it was sold, to a lovely lady who had unfortunately written off her previous Camry the morning prior in an accident.

She came along with her father to test drive the car, pop was standing in the driveway balancing with his walking stick. Though his walking has marginally improved, he is still very shaky and cannot turn around as he once did. Now he ‘side shuffles’ to ‘do a u-turn. The lady and her father got in the car and I asked pop to move out the way so they could back it out of the driveway. Pop remained standing where he was, it seems as if he has lost his ‘awareness’.

Normally he would have automatically moved, knowing that the car wheels would possibly run over his feet but he didn’t move until I held his arm and guided him out of the way. It is a very sad thing for him to give up driving and sell his car, but he knows it’s the responsible thing to do. Mum however won’t let it rest, she is adamant she will not get a motorised scooter and says that ‘This is my lot now to be stuck inside the house every day’.

I am trying to persuade her to get one too, so that they can at least get out of the house when the weather is nice and have some independence. It’s a battle with mum, pop at this juncture is fine with getting one. The battle no doubt will continue.

We are going out for lunch tomorrow with them and some family members and their friends, so today was also time to give pop another pedicure and a shave. Bless him, because he has a bit of a double chin, when he does shave he doesn’t get into the ‘folds and crevices’. So out with the new fancy wet or dry electric shaver was I. I then made him walk with his walker twice to the front door and back.  Yes, I’m a hard task manager, but if I don’t remind him to get up and exercise he lets it slide. He has attended one physio session and has to for a further 10 weeks (once a week) to try and get his core strengthened (good luck with that physiotherapists). He also has to move every hour on the hour and drink more water!

Mum’s memory is progressively growing worse and she loses her temper with me very easily and often! She will salute me now and say “Yes Sir” or “You love to boss me around now” and there is anger in her voice. It’s so difficult not to get upset with her when she puts her stubborn shoes on, but I have to try and remember she doesn’t know that she has asked me the same question 3 times in 30 minutes, or that we have had a conversation about a particular subject several times over.

It is hard for me not to sound patronising, I realise I don’t talk to pop in the same way as I talk to mum and it’s simply the frustration on my part trying to get her to see reason, when clearly it is difficult for her to do so. Whereas I They are no longer the sprightly and comprehending parents that I once knew, not all that long ago, now I see that the ageing process has taken over and is in control.

So that was my Saturday afternoon. I shall continue to post  about my two ‘darlings’ to those who are willing to read.

Elderly and my Pop

I have previously written posts about my Pop but today I needed to write once more, so forgive me for not having a ‘cheery post’ to submit tonight. I simply need to be able to talk about how I feel.

I am watching my father decline rather rapidly. It is the most heart breaking thing I have had to witness (apart from having to hold my 16 year old dog as the Vet put her to sleep) and anyone who has cared for their elderly parents will know what I am writing about. This.. this is something almost unbearable to face.

He will be 86 in July my dear Pop.  

The last few weeks he has been experiencing so much trouble walking, he struggles to actually raise his leg to place one foot in front of the other. His hands also shake uncontrollably and he is embarrassed to eat in public.

Thankfully they are only a seven minute drive from where we live, so I am visiting as much as I can, helping in whatever way I can. Mum is also struggling with walking but currently she is managing better than what Pop is.

They both are so frustrated with life. The last couple of days I have heard mum say,  “If I could end this I would, I can’t do what I use too, I hate being this way”.  This afternoon around 4pm mum phoned,  just as Mr. S and I were heading out to watch a Movie. The call of help – “Dad had a lie down in bed and he is standing but can’t walk”.

Mr. S. and I drove over immediately. Dad was standing holding onto his walker, his whole body shaking. I gave him some pain killers and helped him onto his chair, his middle back and hip are hurting and he has sciatica symptoms. The issue is that he is not walking or able to exercise and his muscles are seizing up. After making sure he was comfortable (as there was really nothing else I could do to help), we went to the pictures (the whole time me watching Oblivion) thinking of how he was. As soon as it was finished, I went back to see him.

Dad in the Middle

He was standing cleaning his teeth holding onto the basin. I asked him if he wanted to get his pyjamas on so he would be more comfortable. Then I changed him, taking off his glasses, his jumper, undoing his shirt and slipping his pyjama top on carefully and very gingerly. I then took his track suit pants off (sweat pants) and put his PJ pants on.

This gorgeous man, my father, telling me it was all right for me to see his ‘privates’, thankfully no embarrassment from his side and certainly none from mine.

Then I gently rubbed some pain cream into his back and put his dressing gown on before helping him back to his chair.
He sat there shaking his head, feeling so depressed about how he had become, how he felt that life was not worth living anymore. This is the hard part, watching the man that you have idolised since you could remember feel that their life no longer holds any purpose.  I gave him a sedative, which I told him to take 20 minutes before he went to bed to help him get through the night without pain, I turned down his bed and placed a pillow for him to put his legs on. I gave him a drink of water. I watched as mum put her arms around him and stroked his white hair with tears in her eyes saying “We are here for you”. It is so hard to be strong in front of them, I turned my head not to show my tears. He replied “My girls”.

I have tried to talk them into moving into an Aged Care facility, but mum unfortunately is being a little stubborn and refuses to move anywhere.  Granted uprooting yourself from your family home at their age is a difficult proposition. I worry constantly about how they are coping and I feel guilty that I am not there 24 hours a day to help and support them. My life is now centred on being there for them whenever I can, this is what a child should do, as our parents age, we are the ones who then have to nurture them,  as they did for us all those years.

I wrote a card for Pop some time back and he must have misplaced it and I found it on his bed head this afternoon. I wrote what I thought of him as a father as a man as an individual. This soft spoken caring human being who has never said a wrong word about anyone in his life, who has always tried to be there for everyone is now in need of my help. He said  “I read your card Ginger” (my nickname) you have a way of making a grown man cry”.  I just hugged him and tears came to both of us. I sat in front of him and told him I know how frustrated he must be feeling and that he has to think that now he is in this stage of his life that he is limited with what he is able to do. I told him not to get depressed about his situation or mums, but to try each day to simply do what they can and what they aren’t able to do, I am there to do.

I fully understand why the elderly want to pass from the earth plain, to obtain relief from their suffering, from the embarrassment that they feel of no longer being fit and able without requiring or asking for help.  It’s humiliating for them. For so very long the mere thought of either of my parents passing has made me almost physically ill. No one wants this, no one wants to say goodbye to those that they love. Now though I understand, when I watch them, barely able to walk or in pain, now I understand…it terrifies me beyond belief,  this is something I hide in the back of my mind wishing for it to go away, to bring me back the parents that I had, for their sake not for mine. Sadly I know this will not happen and they will decline further and all I can do as their daughter is to be there.

We can say they have a ‘good innings’ but that does not bring me comfort.

If I could be by their side all day to help them I would, but as I am working now it is an impossibility. Tomorrow morning I am going over to do the weeding and mow the lawns and just be with my mum and dad.

Oh my darling Pop I wish that you weren’t facing this part of your life as you are, knowing that you were once able bodied, I understand how this must be tearing you apart inside.

I love you, I adore you, I am so proud of you and I am here for you……..your Ginger. xxx