Chat time – Christmas with my penguins

Christmas Day in Melbourne was 30+ deg. We held Christmas lunch at daughter B’s home. Unfortunately their cooling decided not to work, so we all suffered in the heat.

My brother tried to late to get a wheelchair taxi to pick mum and pop up, so my nephew who is a tall, large man pushed pop in his wheelchair to the house just over a kilometre away.

Pop came in and looked around at family who came to greet him, I put my arms around and gave him my special kiss, once on the lips, one on each cheek, one on the forehead. He looked at me and started to cry, saying I held on to Christmas for you. I told him he can just hold on some more then.

I sat beside him, feeding him, then daughter K and daughter B did. We held his glass so he could drink, as he shakes so much now. He enjoyed his food, he cried a few times watching his family. Eyes barely open, due to his MSA and his swallowing becoming more difficult.  K stood up and said a few words of thanks, for those who helped make the day and for still having Pa with us. Mum sat, ate her lunch, knowing but not knowing how we were all feeling.

After lunch he needed to lie down, we wheeled him towards the couch and the ‘boys’ stood him up, the first time in over a month, lying him on the couch where he slept for over an hour. It was a day that had sadness, tears, smiles and memories.

A taxi able to take him back to the home. I called in on my way home, as I hadn’t been back there for some days. Mum refused the air con to be on again, the room was 25 deg, with windows closed.

Each day I’m grateful, each night I shed tears, each morning I hope.

I hope that you all had a very merry Christmas full of love and joy.

Treasure those you love,for they can be your heartbeat, not only on the ‘special’ days, but every day.

xx

update on Pop

Six  days in Hospital & now back at Aged Care (ASL). Life became a complete blur, paperwork needing attending to forgotten. Appointments, schedules…all of it no longer important. Days turned to nights in the hospital. Similar to now. Pop has each day thought it was his last, so we are trying to be positive around him, as he’s very scared of closing his beautiful blue eyes and not opening them again. Our bond so close and even closer now.

Mum on the other hand, though not really knowing what is happening, has, through her vascular dementia changed dramatically. I am her competition, I am a dictator, I’m interfering, as I spend 10-14 hours with pop (and her) and she feels threatened.

He has blood in his urine, a blocked kidney, double vision. Some days better than others, some he smiles, chuckles, calls B and K ‘cheeky little blighters’. Other days or for the most part, his MSA makes him sleep, unable to open his eyes fully when awake, his arms shake, his voice barely audible.

He asked for all the family to come in, so he can then go in peace. 14 of us plus his 2 great grandchildren are taking food a ‘pre-Xmas lunch’ into the home tomorrow for lunch. He asked if I’d get everyone to bring Panadol in, so that he could take it after they leave. I said no & unless you take 100 of them, it won’t do what you want.

Mum and I simply don’t get along anymore, today we had 42deg C, she screamed every time I put their air con as, as her body thermometer isn’t working and she’s freezing as well as the ‘imaginary draft’. It’s draining, it’s frustrating as pop gets upset hearing her repeat the same thing over and over and over and her fighting with me. This is dementia, this horrid disease that has taken her from her family.

She hates me coming in every day, but I will continue to do so, it is my wish and also pops. I hold his hand during the day, when needing to sleep myself, he says please don’t go, so I stay till I know he’s asleep, returning the next day. Mum spitting venom at me for the majority of the day.

I had a service last Friday, I have one Christmas Eve, I told pop he can’t ‘go’ anywhere, as I wouldn’t be able to do it.

Signing the DNR as pops wish, the most painful thing I had to do.

We have him still, life does end, but it sucks and I hate it, the whole situation, especially with mum making it worse.

He knows I love him to the moon and back and when the universe wants him, I know above all else that I will have no regrets.

Thank you for your kind wishes and thinking of me and my family who you have never met, it means so very much.

xx

A very tired me and my darling pop.

 

Pop -Chat time- Long read

Here is Pop in the Hospital. Last Wednesday night, I dreamt that he had passed. I had two funeral services on Friday. For some reason I went to visit him with daughter K the next night (Thirsday) and also to take his new lambs wool rug to make him more comfortable. When we walked in the room at the Aged Care (ASL) his bed was lowered almost to the floor. He had a temperature of 38.6, they gave him panadol. His eyes couldn’t open. He couldn’t speak.

I phoned daugher B, she arrived within 10 minutes. Within an hour his temperature went to 40.6. They called a locum (local doctor) who was given the run down. He then said to the 3 of us, that he has an infection – not knowing where from. Given the state of his MSA & Parkinson’s, we had 2 choices. Take him to hospital to give him antibiotics, but given his state not to put wires and tubes in him as it would be too stressful for him. The other choice, to leave him in the home and let nature take its course…

I phoned my brother, he is of a different mindset to me, I said no he goes to Hospital. The ambulance came and us 3 girls went to the hospital where he had X-rays and blood tests. Mum didn’t come, half understanding, half not. She cried and hugged him as we left, saying she can’t live without him, as we all thought…

We all stayed till 2am. I couldn’t stop crying, either could my girls. Telling him he’s not going anywhere and to stay until I returned from the services and fight.I crawled into bed at 4, then up at 8 to do the funerals…this was not easy.

Back to the Hospital with K as soon as I was done. When I walked in, he opened his eyes a little more and started crying. As K went outside for a little, tears were unstoppable, I lay on his bed holding him, his speech still barely audible. I told him how much I love him. He started to cry saying “I don’t want to go”… I told him how I couldn’t have asked for a better father and pa to my girls. How proud of him I am, how he has accomplished so much in his life and much more. All this through so many tears.

B came in, his grandson, wife & their baby & Mr.S. Mr S doesn’t cope well with hospitals, remembering how his mum passed in one.

Mr.S took K back home, I slept at B’s. Back to the hospital at 7:15. Pop is more lucid, though not conversations. He has a catheter in and about to has had 3 enemas, (as he hasn’t been for 6 days).

His temperature is normal, BP a little low. I washed him, brushed his teeth and gave him a shave, (Santa has come early) as you will see.
He sleeps on and off and can open his eyes more. By mid morning he was talking far more and I even got smiles from him. It’s a waiting game. If the infection doesn’t subside in another 12-24 hrs, they said their best option is to just make him comfortable and in no pain..

Mum phoned this morning (Saturday) “I was just thinking, if dad isn’t going to be sitting in the chair next to me, I want to move into a unit” she got angry when I tried to say no and hung up on me, she doesn’t understand what’s really going on.

Doctors just came in, aspiration pneumonia, swallowed liquid or food the wrong way and went into his trachea to his lungs (hence infection) and a bowel obstruction. I stayed till 12am as he didn’t want to be alone, having pain spasms every couple of minutes in his tummy. I held his hand as he squeezed hard, rubbed his tummy, told him to breathe through it.

It’s now 6:30am Sunday morning and I just came in again, he just woke up, but he’s not like yesterday, I sit beside him and hold his hand.

Sorry for the long post, I’ll be back reading, when I can.

Thoughts and hugs for pop please.

I know as I sit beside you
I don’t want you to go
Call it selfish of me
But this I really know

As I hugged you on your bed
And I spoke my words of love
You told me how you treasured me
Those words were more than enough

I’ll have you for as much as I can
As I can’t bare that you won’t be
But the circle of life will continue
In my work – that’s all I see

 

Wedding pics!

You can click on to enlarge.

Upstairs where reception was held

The Victoria Star

Downstairs waiting for the fun to begin

Rory and Isabel

One of the duo, Isabel, who sang and played music with her husband Rory.

Peter and Rose and the handcuffs!

Rose and Pete and me

Chat Time

yes I’ve been slack again and not read anything ALL weekend. I have an excuse…I do..Saturday I was down in the Geelong area which in fairness is about an hour and a half drive from me. Mr. S was attending his sons bucks night (he’s getting married on the 26th). Three friends a brother and his wife and his sister and I went to the Day on the Green, which is an outdoors concert.

Fleetwood Mac in all their brilliance. We arrived at the motel, caught a taxi to the bus stop, 20 min trip on the bus. Another band on, but by that time we were downing a few wines and eating nibbles, so we didn’t listen very well. Then at 8 they came on and played for three hours. We also received free hats and blankets as you can see. I tried to,post a small video but I don’t have the right file. Finding the bus amongst about 40 buses was fun, in the dark..not. One hour to get out of the gate, there were over 20,000 people. Don’t let the sun fool you, the wind was freezing. I was watching them in coat, scarf and leather gloves.

Couple of photos, sorry off a mobile so not too great, poor Greg…well it was a very big day. So big in fact that I lost my voice Mr. S is clapping his hands as I write. Problem is I had a funeral to conduct today, which I did with a very croaky and at times very high pitched voice!

Next  post some photos from the wedding! Then yes I shall return to reading, I promise.

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

Havin a chat – Top to Bottom…possibly just for the girls..or not – Chapter 1

Chat time – Update – 3 months on

If it rains, lift your head aginst the drops
Try to catch the light splintering through the dark
For it is there, it can be found

Hello everyone, it has been so long since I have been here.
I have missed the camaraderie.
Life has been so busy, that reading posts, or even the thought of writing one has been daunting.

The update is that my penguins health is not too good, especially poppa penguin. He has had a cough, antibiotics and now fluid on the lungs. We are waiting for the results of the XRay from last week.
He can hardly walk now, nerve endings gone on the souls of his feet, partially due to his diabetes, which is controlled by diet only.
Next month he is to have an MRI on his spine and legs, as his new Neurologist thinks there is more in his lack of ability to walk, than Parkinson’s.

Mumma penguin, has had her moments, slowly settling, but with Alzeihmers, we now grasp the good moments and suffer the bad and angry along with her. My brother had to have their room phone disconnected over night, each night, due to her incessant phone calls to him, demanding her things from home, such as hand mixers, or electric frypan, both she cannot use in the home.

Daughter K, is still living with Mr. S and I and still unable to work till the end of the year, or more. From the last seizures in June, her short term memory is still affected. She cannot remember what happens the day before, we are hoping that this will improve. The doctor thinks possibly 3 months or more.
The light at the end of the tunnel, is she is starting to feel and be stronger about herself and her life and no more thoughts or actions about ending it. The morning that I ran into her room to find an empty bottle of pills on her floor, took ten years off me.
No longer going out with J, she has signed up for some dating websites over here and is starting to meet people (men) in the hope of finding her true love. She has already been out on two dates within a week.

Me? In July I had my 60th birthday, another little milestone that was overcome. A fellow WP writer and good friend, Michael, came from interstate to join in the celebrations, which I was greatful for, in so many ways.

I’m up to 87 funeral services and have met with the couple whom I will be marrying in October on a boat and written the ceremony.

Life does go on doesn’t it, what we experience, what we feel, what we see. At times it got the better of me, but with supportive friends I got through.

Although I have had a lot of rain….light is splintering through.

Sharing some photos
1. Pop with my great niece Mia, at her 1st birthday.
2. Pop presenting mum with a new wedding ring, as her old one was cut off many years ago.
3. K and I in Noosa QLD a couple of weeks ago. A vacation with Mr. S.
4. Horseriding in Noosa.

Miss you
xx

Chat time – it’s been a while

Hello my friends,

I’m popping in tonight, just to update you as it’s been so long since I was here.

It’s so involved that I am going to try and be as brief as possible.

Mum and Pop Penguin are entering their fifth week in the Aged Care Home.

We finally sold their home last week (& hoping the purchasers finance gets approved).

Her Alzheimer’s is progressing and I’m her trigger it seems.

I now am not visiting for some time to try and get her to settle.

I will visit Pop, but only see mum, if the staff tell me she’s in a good mood, or wishing to see me.

He is suffering too, getting weaker and having to listen to mum questioning why they are there. She has even asked for a divorce, they have been married 64 years. She has hit him, called him names.

This is not my mum. Her shell is there, but she’s not the same on the inside any longer, some lucid moments, she’s not withdrawn, but she’s angry, especially when I enter the room.

She was whisked off the morning we took them, not really understanding what was happening. She thought they were going on holidays, seeing bags packed.

Over the days, the questions were continuous.

You’re not selling our house, I love my home, why are you doing this. You’re conspiring against me, there’s nothing wrong with me.

I told my brother to take her back home to say goodbye, to deal with her grieving, in the hope she would be eased.

The Assistant Manager who is absolutely wonderful with them, went with them, I couldn’t. She cried for forty minutes, but thankfully, got back on the bus to return to the home.

She accepted on the day, by the next day, she was asking if it had been sold and that she wasn’t going to die (in her words) ‘this dump’.

When I phone to see how she is, they say she is doing fine on most occasions.

It breaks my heart not seeing her, but it’s necessary.

K and J were ‘evicted’ from their last dwelling earlier than anticipated, after a few incidences.

My ex husband took them in for a week, but he was getting very agitated, whilst I stressed trying to find them somewhere permanent for them to live, knowing that shared accomodation again would be fatal.

Using some of my savings from selling my house, I bought them a caravan with annexe and ensuite, which though is one and a half hours drive away, it is a 6 minute walk to the beach.

It is the only caravan park that takes residents, this was my only option, to let them have a roof over their heads. They have been there since last Sunday. They still both aren’t working.

Eldest daughter B and her husband moved into their new home two weeks ago, which is 5 mins walk from where mum and Pop are.

I’m still doing services (now 73 since commencing) and having major panic attacks about the wedding to conduct in 5 months time.

Mr. S and I are still good, he’s had to put up with many mood swings in me the last few months, most of them not good.

I have missed you all, but I still can’t read your posts or write any poetry, my mind is not in the space required.

I hope you are all keeping well and enjoying your writing.

J x

Thank you for your feedback

Popping in to say thank you for all your comments on my post from yesterday.

I am still deciding how I should write the transition of my penguins into Aged Care. I’m not sure at this juncture if I have the strength to write in full so I may just continue with it in my chat updates.

I’m having a few days off, as tomorrow my brother and I are looking at another room in the same facility, after that an appointment with the Real Estate Agent.

The decision had been made to move them Thursday week. Mumma P has cried, got angry, agreed to go and started the whole process over again, every few minutes.

I just cried last night, but that’s to be expected and I’m sure there will be many more tears shed along this journey, until they are settled in their new abode and I’m assured they are being treated alright and are happy. (Or as happy as can be expected).

Thursday morning I have a Service, Friday the dentist, so my free time is a little less than free at this point.

Take care everyone, I look forward to returning as soon as I can.

Love you all

Jen
x