Tag Archives: dad

And this week presents…

Well, great news, I’ve got work as an electoral officer at the upcoming state election on the 9th September. It’s a long day so I will get the full pay plus meal allowance and training allowance, so I’m pretty happy to have some spare cash coming in soon.

I also got my roster for HSC Supervision at International Grammar School at Ultimo. That starts on the 16th October and goes ’til about the 4th November and I have quite a few shifts, so that will all help in the lead up to christmas. I have expensive taste in skincare so I don’t expect the family to provide that for me!

This visit with Dad was painful this week, he seems to have lost continence again, the poor lovely, just when he was getting better with it. It seems his meds are working too, as he was very quite, didn’t try to contribute to conversations. He just seemed to enjoy the sun as we had purchased him a new jacket to keep him warm when it’s windy.

As far as my cancer goes, we are still waiting for cells to grow back to confirm the diagnosis so I only have to wait around 6 weeks now, then we can go have another test and come up with a plan of action. I’ve come to accept it now and have stopped freaking out about it, as this will probably make it worse. As I said before, at least I’m not pregnant this time and we can sort it out straight away.

They boys are good, they have been loving me and supporting me through this (and many other things!). I couldn’t have asked for a better support crew. Love my boys very much xoxoxo

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Phone Calls in the Night

So I had just gone to bed last night and took my phone with me as I needed the alarm for the morning (I don’t like taking my phone to the bedroom, and my alarm clock is stuffed so no choice). I get a phone call from a number I recognise but couldn’t place, so I answered. It was the nursing home calling to say that Dad is crying and wants to come home. I just said to her to ring my brother and hung up. My dear brother then had the awkward call with Dad.

The nursing home shouldn’t be calling me for a start, they have instructions to call my brother for anything and everything. And secondly, they shouldn’t be calling us to deal with him when they are there to do a job. They told me they were going to medicate him for this, so medicate him and deal with it. Neither my brother or I are in a position to do anything about his situation. He got himself into this mess because he refused to take better care of himself, and I don’t think he understands that he can’t look after himself. I think we are going to have that horrible conversation with him where he’s going to be “I want to go home!” and we have to say to him that where he is, is his home, he doesn’t have anywhere else to go and can’t take care of himself anyway.

This all might sound harsh, but I am really exhausted with him. At least he can’t “escape” from where he is like he did when he was in respite last year. He was in respite after a stint in hospital and wasn’t able to go home and take care of himself. I was trying to get care in place for him and he just packed up and left, trying to make his way to my place! I can’t take care of him here, and he can’t be left alone as he is unable to take his medication properly, even though they are in Webster Packs. He also can’t control his eating, so he will end up with diabetes again, and because he doesn’t take the medication properly, he will be back in hospital within a week.

He is in the nursing home for his own safety and care. I know he would be hard for them to manage, but they are supposed to be medicating him to help him get through this. We will have a good talk to them when my brother and I go on Saturday morning, and I think I will take my phone number out of his file.

What’s been happening?

Well, there is so much to say as it has been quite a long time since I’ve been here. I’ve often thought to myself that “I should do a blog update”, and of course, that is all it has been, a thought. Just had a lot happening this year and not had the “energy” to do this. Now is the time to turn that around.

I’ll start with Dad. He’s in the nursing home at Padstow, and has made improvements from where we were in January/February. He’s walking again, with the assistance of a walking frame, which he also needs to get up and down. You can have a chat with him, but you might not always understand what he is trying to say to you. He’s also recovered enough to want to “fight” with other residents, so this is not necessarily a great thing. Those who know him know how combative he can be, but in a dementia ward, other residents don’t know what’s going on with him and he can get aggressive. Hopefully this doesn’t get any worse, or the staff will really have problems with him.

He lost a lot of weight back at the start of the year when he was really sick and unable to eat. He has, however, put a fair bit of it back on now that he is eating again. His diabetes went away, but I am starting to become concerned that he will have it again soon if he keeps eating the way he does. They must be letting him have too many biscuits and cakes throughout the day, because he will eat as many as he can get away with, when he shouldn’t really be having any.

We’ve also discovered that Dad is having low iron issues. He’s not eating the meat that they serve (I’ve seen it and don’t think I’d be too keen on some of it!), which doesn’t help. They do believe that he may have some issue with his bowel, such as a polyp that is bleeding, but we have decided not to put him through further testing as it will be too rough on him. We’ve decided to treat the low iron and we’ll deal with anything else if and when it arises.

Now for my health….. I recently had my annual Pap smear and blood test and got the results today. Cholesterol and blood sugar are really good, thyroid is good, but unfortunately, my liver functions are still elevated and not coming down even though I have lost weight. I was a little surprised by that, and the doctor has decided to investigate this further to be sure it’s no more than fatty liver. Not great, but if that’s it, it will get better the more weight I lose. I’ve lost around 16Kg so far, another 9 to go.

Unfortunately, the Pap results weren’t great either. It looks like the cervical cancer that I have been clear of for 20 years is making it’s comeback. I have to wait for the cells to grow back so I can have another Pap smear in October and see what the results show. I’m not too concerned at this stage, as it is very early days and we’ve detected it early, so it shouldn’t be too much of an issue to get rid of it again. I’ll take every treatment they offer to get rid of this and it will all be good again.

Anyway, the MOTH and the boy have been great about this, and they are going along well. The three of us make such an amazing unit, and we all love and support each other with whatever we have to deal with. We face everything as a family, and we’ll get through all this together.

Gonna love you and leave you there. Other things have gone on, and I’m sure much more will, but I won’t leave it so long ’til next time

About Dad

I know it’s been a while since I last did this as I have been busy studying, but with all the developments regarding Dad over the last 6 months I felt that I must take the time and give you all an update.

In early August 2016 on a Sunday morning when we went to drop his paper off, we found him unconscious on the bedroom floor of his flat (MOTH was with me). We called an ambulance straight away and they arrived quickly. Initial assessment showed that he had a fever and a blood sugar level so high that their tester couldn’t read his levels. They took him to emergency at Bankstown Hospital, where he was admitted with pneumonia and delirium. They couldn’t determine if the high sugar triggered the pneumonia or the other way around. Either way, he was quite sick and was kept in hospital for about a week. He was discharged with antibiotics and insulin injections, which I had to give him each night as he wasn’t quite ready to learn to do it for himself at that point.

He was home for about a week and a half when we went there on the Sunday morning again with his paper. I noticed that he had all his clothes on backwards and he had a good chuckle when I pointed it out. He also said that the equal that he was using in his tea and coffee was terrible and made the cuppa’s milky. I looked in the cupboard and saw that he had been using cornflour instead of the equal, so I showed him the equal was in the sachets and he said he would be okay using them now – he just forgot they were in sachets. I had to leave and I asked if he would be alright until I got back that night around 8 to give him his insulin. He said he would be so I left and came home with all the shopping and stuff. He was on my mind all day, but I was going back that night so he wouldn’t be alone for too long.

When I got back to his place that night, the outside light wasn’t on so that was unusual, and as I got to the door, I noticed a note that his neighbour had left. She apparently found him wandering the street in the early afternoon and he was dazed and confused. She called an ambulance for him and he was taken to Bankstown emergency. We got down there and saw him, he knew who we were, but not much else and he wasn’t making much sense. As his blood test showed infection they tried to do a spinal tap to rule out meningitis and the like. They couldn’t get him into a good enough position to get the fluid. They tried again the next day but again couldn’t manipulate him into a suitable position for the procedure. They suspected sepsis, but this couldn’t be confirmed. They treated him for it anyway, better safe than sorry. He spent the next week in hospital and was having hallucinations – seeing a black snake under the bed, large flies flying around the room, etc.. He wasn’t well enough to go home on his own, so I arranged for him to go into respite at Yagoona Nursing Home until such times as we could arrange for home care services for him.

He continued to improve while in respite, and just as I was making appointments for  ACAT assessments for him, he absconded from the nursing home and was wondering around Bankstown looking for his way to our place. When I finally got hold of him on the phone, I sent him back to the nursing home, who called an ambulance for him and had him taken to the locked psych ward at Bankstown Hospital. He was there for about a week while they assessed his needs and made arrangements for home services. They had to be sure that he could take his medication properly and could complete basic tasks at home.

He went home and had the services coming around a few times a week to check on him and take him shopping. He started catching a cab to where we shopped every Sunday morning so he could “bump into” us and get us to give him a lift home. He also sent his laptop over to get “fixed” by our son, but there was absolutely nothing wrong with it, he was struggling to remember how to use it.

This went on for a couple of weeks, until a Monday late in October when I got a phone call from the Diabetes Clinic at the hospital, saying that Dad was more confused that usual and that he couldn’t remember how to use his BSL tester. She took him to emergency and he was admitted from there with confusion and high blood sugar. They did an MRI and could see the evidence from his old strokes, but other than that all was okay. They did another MRI five days later when his confusion worsened and found that he had had an “embolic shower”, showing that he had many clots throughout his brain. This showed that the clots are forming elsewhere (heart) and travelling to the brain. There was no other option but to put him into full time care once he stabilised.

He moved to Casa Mia Aged Care late November and has been in the locked dementia ward. He has been unable to communicate with us or staff, but has been co-operative. Unfortunately though, he has started to sleep all day and roam the halls at night. One night he fell asleep sitting in one of the chairs and then fell forward out of the chair. There was no apparent damage apart from a swollen nose and a small graze to the head. They changed his sleeping medication in the hopes that it would change his patterns, but he is still drowsy all day and awake all night.

He stopped eating his food last Thursday (12/01/17) and got more and more drowsy, not even responding when Allan and Julie went to visit and tried calling him and waking him. They expressed their concern to staff and staff were looking into it. On Monday 15/01 the nursing home called and said that he hadn’t eaten for 2 days and that they are concerned as he is more drowsy. They told us they had called the doctor for him and asked us if it was okay for him to be transferred to hospital. At about 11:30 Monday night, I got a call from the Registrar at Bankstown emergency letting me know that Dad was there and was being admitted and treated for pneumonia. MOTH and I went to see him Tuesday morning and he sounded quite chesty and we couldn’t rouse him at all. The staff told me he only had a pain response. When Allan and Julie saw him that afternoon, he was semi-conscious and moaning, still unresponsive to voice.

Today (Fri 20/01) we had a family conference with his treating doctor and registrar. They say they have changed his antibiotics and hope that this gets the infection under control as it has worsened slightly. He is also showing inflammation but this is probably gout as he seemed to be sore in the usual gout sites. They were putting in a Naso-gastric tube today to start giving him some nutrition as it has now been about a week since he has eaten and they feel that he might have a better chance at recovery with some nutrition. We’ll just have to see how that goes, but we did warn them about how he pulls tubes and every thing out when he has the chance so they are going to put him in special mittens in the hope that this prevents him pulling out the feeding tube.

It’s all wait and see at this stage. We just need to see if the nutrition aides in his recovery and helps him fight this infection. It’s not looking great at the moment, but we have said to them to take all necessary interventions to make him comfortable, but if things take a turn for the worse to not resuscitate him. They have said that if they did need to resuscitate him that he would be much worse off and we feel that this would be unfair to him. Fingers are crossed that things get better. I’ll keep you posted.

Decisions made…

It was wonderful to see Dad again this week, and see how much he has improved. He is walking so much better, but still tiring on the stairs easily. He managed to walk around to the kiosk at a good pace to go and get lunch with me. His memory is coming back, but he still struggles in conversation, trying to find the right word. He does get frustrated with himself, but I guess that is to be expected. He’s still in the locked up section of rehab, so obviously he’s at risk of wandering and they still want to keep a close eye on him.

We both had burgers for lunch, and I know he really looks forward to that when I come in. Just before we went to lunch, the diabetes nurse had a good talk to us and organised for him to have a new blood testing kit, which was really good. He has since been checking his own sugar levels and recording them for the nurses to check. He’s also off the insulin now, so hopefully things will be okay on that front and we won’t need to add injectables to his NDSS card.

I stayed in Katoomba overnight at my friend Lisa’s house and we had an awesome night. She cooked me an awesome steak dinner with lots of steamed veggies and it was just divine. She had to go into Katoomba hospital herself for surgery on Thursday to have the rest of her teeth removed, so she wanted a good feed the night before too. We sat around talking and having a few beers and it was a really lovely night. The next morning she was up at 5am to have breakfast before she had to fast. I got up too, and got to watch the sunrise, which was absolutely beautiful.

Back at the hospital on Thursday, I took Lisa around to day surgery before going in to see Dad. It was his lunch time and they were bringing him his food, so I ducked back to the kiosk for a coffee and sandwich. When I got back to Dad, it was time for physiotherapy, so we went for a short walk outside the hospital. He says his feet really hurt him, but that’s because he spent so long in bed that everything needs to get working properly again. The physiotherapist went to help him as he stepped up gutters and the like, so obviously he’s still concerned about Dad’s ability to manage steps.

We had a family conference at 3pm. Allan and Julie were there, as was Dad and all the people involved in his treatment. The object of the meeting was to determine where Dad was going from here. He is not well enough to live independently so that means he cannot go back to living with Allan and Julie, as they are gone for 12 hours a day for work, and they are usually busy on the weekends, so are unable to provide the assistance that Dad will need. I suggested that if I had the space I could look after him, but the Social Worker immediately kyboshed that and said that he needs to go into a nursing home. He will have his own room and bathroom, but will have a dining room to go to for all his meals. Hopefully we can find him a place where he will still be able to do a bit of gardening, that’s what he’s talked about the most while he’s been in hospital. He was also told that he no longer able to drive, but he just said “point me to the nearest train station”. I would be very worried about him getting out and about on his own, He will have the ACAT assess him on Tuesday, then we will be able to look for a place for him, hopefully between Parramatta and Penrith (maybe hills district).

So, that is where we are at now. I’m not sure how Dad is taking all of this, but I’ll be able to talk to him about it when I see him again on Wednesday. I think he was more worried about me getting him a ticket in tonight’s 21 million lotto draw than all of what had just happened. I think he needs time to process all of what was said. He knows we’ll still visit him all the time, but I’m sure this was a huge let down as he was expecting to go home on Thursday. The Social Worker said to him that was never the plan, but again, I’m not too sure how much Dad took in. As I was leaving, he got me to come back to his room, just to ask me about the lotto ticket. I made sure we got him an autopick this morning. It would be nice if it came in for him, but I doubt it. It sure would be good to get him his own place with his own private nurse!

Making Progress….

Did the big trek again on Wednesday to see Dad at Katoomba Hospital. He is getting so much better, something they were saying we might not see. He was in physiotherapy when I got there and he was doing really well. He’s still quite weak, and you can see he has a bit of a struggle when it comes to steps, but he’s actually walking now instead of shuffling, albeit slow. He also appears to be losing weight still, which is a good thing. He doesn’t have the huge appetite he used to have, so that is really good. It’s still hard to get him away from sugar, especially soft drinks, as he hates those “diet” soft drinks. He doesn’t drink enough water though, so they are giving him small bottles of diet lemonade with each meal to try to encourage him to drink a bit more.

The food in rehab looks and smells lovely, and he has been enjoying it. I think he also likes going to the dining room to eat, it’s a bit social even if it’s a bit degrading putting a huge bib on to eat. I suppose that’s better than being grubby, or having to change after each meal. The portions are quite generous, and everything is balanced to keep his sugar levels under control, which they seem to have done.

The wound on his neck is much better, finally healing. It looks a bit rough, but that’s not surprising given how much he picked at it from the start. They couldn’t tie his hands down forever, but now that he has more of his faculties, he seems to be leaving it alone. He’s been enjoying watching the Commonwealth Games over the past week, so that has been keeping him occupied, along with the books I have taken to him. I don’t know how much he’s reading, but talking to him about the story line he knows what is going on in what he has read, which is awesome.

My dear friend Lisa came and visited while I was there, and Dad got a little teary on seeing her. I think he was just feeling a little overwhelmed, but that soon passed. They had a good catch-up, and she will be popping into the hospital when she can to keep him company. I am so blessed to have a friend like her (as I am with my other friends), she has been awesome. I will be staying at her place in Katoomba next Wednesday, so I’ll get to see Dad twice. She has her own surgery to deal with next Thursday, but at the same hospital that Dad is in. I can’t thank her enough for all she is doing for us.

It’s a long trip to do in one day, so I will be grateful for the stop over next week. I can’t believe how exhausting 3 hours travel each way is. It totally wiped me out. I spent yesterday doing almost nothing, just had no energy or motivation to do anything, but did manage to cook a nice dinner for us so the day wasn’t completely wasted. I’m not happy about only going once a week, but I really can’t manage more than that. Dad is happy that I come each week, I just wish I could do more. Next week will be 2 visits, so that’ll be good. I’m also going to cut his hair for him next week, so I must remember to take the clippers with me.

What a difference a week makes…

Dad was really good today. He was asleep when I got there, so I wandered back to the kiosk for a coffee and brought it back with me. He wasn’t in bed when I got back, so I was a little shocked, but then he came out of the bathroom so he was good. He was walking and getting around unaided, which was amazing, as he needed two nurses to get him up on to the frame on last Wednesday just to turn around. Now he is getting in and out of bed and to his chair by himself. Apparently, he does tend to wander off a bit so thankfully he’s in a locked ward.

He’s still confused to talk to, but you can have a conversation with him now and he can mostly follow it. He even asked me where the boy was when he first saw me so that was excellent (the boy didn’t come as he was up all night skyping!). We had a good chat today, in between watching “The Footy Show”. He’s starting to remember a lot of the recent past, which is good, but hopefully it won’t be upsetting him. He didn’t seem too cranky talking about it, and he’s prepared to take his time getting better, then sort out what needs to be sorted. Getting better is much more of a priority at the moment.

I received a text from my brother this morning, saying how much better Dad was and that he has been assessed for rehabilitation. The first person to assess him said no, he wasn’t a good candidate, but then another assessor came through and assessed, not knowing about the first person, and decided that it was worth trying rehab for him. Evidently, a place has opened at Katoomba hospital, but it is only on a trial basis. It’s a lot further away for me, but you need to take the place when it’s offered wherever you can. I’ll make arrangements to go up on the train and maybe stay with a friend overnight and return to Sydney the next day after seeing Dad again. Fingers crossed he comes good in rehab, or he won’t be able to stay there long and we’ll have to find a suitable facility for him.

Allan also said that Dad asked about Mum, as if expecting her to appear. Unfortunately, Julie had to explain to him that Mum had died a long time ago and he said she had been very ill. He was sad and disappointed at that, but the conversation just moved on. I’ve been waiting for this, and I’m kind of glad it wasn’t me in the hot seat. A big thanks again to my brother and his wife for everything they have done during this process. They have been by Dad’s side nearly daily and have kept everyone informed of what is happening as they know details. They have made this much less of an ordeal than it could have been and I am eternally grateful to them. They will let me know if/when the hospital moves Dad, then I can make plans about what I need to do to see him as often as I can.