Tag Archives: stroke

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.

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A Very Busy Week

Wow, what a week! It started last Saturday when I went to visit Dad as I hadn’t been to see him that week due to the norovirus doing the rounds of the ward. I still had to mask up to see him, and I kept sanitising my hands and everything I came in contact with. I even had a contingency plan for when I came home so that I stripped off in the outside laundry and changed into a robe, throw all my clothes in the washing machine, come in the house and hot shower scrubbing head to toe. I sprayed my shoes and my coat with Glen20 to kill any germs that might have lingered on them and left them in the laundry overnight to be sure. Dad was just getting over the virus when I saw him, so he was still quite bedraggled. He got stuck into the cappuccino that I got him, and he tucked into his salad for lunch which I took as a really good sign. I could stay with him long, but he was really happy to have seen me.

On Sunday we did a roast chicken and salad lunch for our dear friend Bernie. It was her birthday this week, and we always like to do lunch for each others birthday. It was good to kick back with a few drinks and chat, because even though she was over just the week before, we still had so much to catch up on. She’s been in our lives for so long we’ve become family. I love her like a sister. I got pretty smashed so I just relaxed after she left and let the boys fend for themselves for dinner, I was still stuffed from lunch.

Monday morning I spoke with my brother and said that I’d googled a list of Nursing Homes for Dad and that I would start checking out all the ones with vacancies between Parramatta and Penrith. I spent the best part of the day on the internet and phone, but the only immediate vacancies were for women, so that was no good for us. I was hopeful with one particular organisation, however it turned out their places were not in suitable places for us… We really want to keep him in between us geographically, so when I found a place at West Ryde, I didn’t even bother, but that was the only male vacancy I found.

I took it easy on Tuesday, just did a few things around the house as Wednesday was the big travel day again. I actually don’t mind the travel, but it really knocks the stuffing out of me. It’s nice and relaxing to sit back and read a book during the journey instead of stressing out in the traffic on a 2 hour drive. I don’t have it in me to do that kind of driving, and my bus and train connections all line up so I get a good “run” both ways. Lisa came and had lunch with Dad and I in the Kiosk and we all had a really good meal and laugh. Dads memory is coming back to him, but you do need to help him fill in the blanks (if you can!). We went back to the reading room to watch the tv after lunch and just chatterbox in general. I gave his toenails and fingernails a trimming this week, they were getting really bad, and I had been meaning to do them for him anyway. Afterall, I have given him a haircut, and I was going to take my nail clippers that week, but I just forgot. Anyway, it’s done now and they’ll be fine for a while now.

While I was visiting Dad, the Social Worker (Ming) called me to tell me of a vacancy for Dad with UnitingCare Mayflower Village, Westmead. She gave me Diedre’s name and phone number and said to give her a call. I couldn’t do it there and then, and was going to do it when I got home, Diedre actually called me while I was sitting at Katoomba station waiting for the train to return home. We made arrangements for me to go and visit the premises on Friday at noon, as I knew Thursday was going to be no good for anything. It all sounded good over the phone, but I was really happy to get a call with a place for him now.

Thursday was a write-off. I got up, dealt with MOTH’s mate, and went back to bed. I was totally exhausted and really needed some good catch-up sleep. I even knocked Amanda back for coffee when she called, and she’s my sis! I felt really slack, but I just felt like shit and was just waiting for his mate to leave so I could go and relax. MOTH was the one who suggested I go back to bed, and I didn’t feel guilty as I had taken Jordy for her walk. I went to bed at about 10am and didn’t get up until 1:40pm. I was still buggered though, and was determined to try making Bolognese sauce. I quickly realised that wasn’t going to happen, so MOTH put everything away for me and he got pork steaks out for dinner and we had them with wedges and jewels. I’m really grateful that he took over, I didn’t think I was going to be able to do anything. Even after dinner he did the cleaning up and took care of everything. I’m blessed to have him.

Today, MOTH came with me to have a tour of Mayflower Village. It was only a half hour drive from our place, less than 20kms. I liked that he would get his own room that comes with a bed and bedside table, and a chair, hopefully. We would need to get the rest of the furnishings for him, but that won’t be too much of a problem. He will have to share the bathroom, but that’s being renovated at the moment, so he will have a nice, new bathroom to use. The dining facilities looked really nice, and the menu options were good. All the food is prepared on site, and will keep him healthy. There are plenty of other residents there, so he’ll never get lonely, and Dad makes friends easy enough, he just doesn’t always share well, which is why his own room is important. Now I’m just waiting on some paperwork from Centrelink, then I well be able to complete his application and have that all done and in in time to secure the room. I think he will be happy there, and I will be able to see him at least twice a week so that is something that I am really looking forward to. We really need to get him out of hospital as soon as possible and into this hostel kind of arrangement.

Anyhoo, that’s enough from me for now. I’m still buggered, and I’ve got more to do. I’m planning housework tomorrow, and a jewellery party later in the day. We’ll just have to see how it all goes. Until next time, tell your loved ones just how much you love them.

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.

An Epic Adventure…

It was such a huge day on Wednesday, it has taken me until Friday evening to write about it! It started with leaving the house at 8:25am to catch the bus to Lidcombe, jump on a train to Parramatta and change there for Katoomba. After a nice little walk, I got to the hospital at 11:40am to see Dad. They have moved him there for rehabilitation, as it goes at a slower pace and he may be able to handle it much better.

He was asleep when I got there, but soon woke up when I put the coffee on his table. He was kicking the mat away that the nurses told me was alarmed so he couldn’t sneak around of a night. He tried going out the other side of the bed so the nurses put that rail up to slow him down. We sat and talked for a bit, and the Occupational Therapist, Tara, introduced herself and asked us a series of questions about Dad’s living arrangements and what he did with himself before the stroke happened. I say “us”, as Dad couldn’t answer all the questions by himself so I had to answer quite a few for him. Dad was also more interested in the medication trolley as it made its way around the room with the lovely nurses, he has the attention span of a gnat.

Tara finished with us, and Dad had some panadol, then it was time for lunch. He didn’t want the food the hospital was serving, so I made sure he was allowed to go and took him to the kiosk for lunch. We both had plain hamburgers, and they were quite yummy. Dad was happy to have a bite of real food – something to sink his teeth into. He’d been complaining of no bread, so I’m sure the bun helped. I know Allan and Julie have taken him some lovely food, but I don’t know if it’s been the minced food he’s been having in the hospital diet, or something he can chew on. I got him a Pepsi Max too, and encouraged him to drink up, as he needs the fluids and he’s not drinking water. They do threaten him with the drip though, so he’ll take a sip of water while they are watching. That’s no-where near enough

While we were having lunch, he wanted the newspaper so I got that for him. He’s been keeping up with current affairs and all the happenings in the world. I take that as a good sign. He’s able to discuss what is going on and give his point of view. When he discusses past events, however, he tends to get them somewhat confused. In both instances, he still struggles for words, but you can get the gist of what he is saying and help him with the blanks.

He has tape on his wound, as they told me it had become infected in a small part of the cut. I’m not surprised, the amount he has worried at it. He’s constantly picked at it, ever since they removed his restraints in intensive care. He opened it back up when I went for coffee for him during one of my visits to Nepean. I’m sure it will eventually heal, and now that he is in rehab, he may be more occupied by external factors and not pick at himself.

I didn’t want to leave him, as I felt I hadn’t been there very long, but it was nearly two hours, and I wanted to make sure I got back to Katoomba station for the train home. They only depart hourly, so I didn’t want miss it. It was a beautiful day and I enjoyed the walk back, and it’s not too far anyway, about 15 minutes. I had to change trains at Parramatta, and again at Lidcombe to get back to Bankstown for the bus back to Condell Park. MOTH came and met me at the bus stop, as he needed to get supplies for the household and thought he would pick me up whilst at the shops.

I was so relieved to finally be home though, and that was at about 4:50pm. I was totally exhaustipated…. and I had to cook dinner! It was a simple steak and chips, and everyone was happy with that – lucky for them, as there was going to be nothing else. It took me a long time and a valium to wind down, but I eventually fell asleep in my chair in front of the television. I can’t even remember what was on. All in all though, it was a really good day, as I really relaxed on the trains and read my book and I found this preferable to driving there and feeling stressed. It takes an hour each way longer, but for me, I think it’s worth it.

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.

Another visit…

Went out to see Dad again today, and it was lovely to take the boy with me finally. It seemed to take forever to get there as there was an accident on the M4 just past Wallgrove Road. Traffic crawled for about 3kms then we all took off, couldn’t see any evidence of the smash, hopefully it wasn’t too bad.

Dad didn’t know who we were when we got there, which was a bit sad as he remembered me last time. I was expecting him not to know who the boy was, but was really hopeful he would remember me. When the nurse told him I was his daughter, he just laughed, I think at himself for not knowing. I told him the boy was his grandson, and he laughed again, kind of surprised. I think as he doesn’t remember us, it must be a shock to him each time he is told who a relative is. His speech is still a bit slurry, and he rambles off about strange things so I have no idea what he’s talking about, but I do try to talk to him about me and my family and how we are all connected and different things we have shared together in the past. He seems happy enough when we do talk, but he really doesn’t remember much.

I fed him his lunch today (haven’t done that for 19 years!) and it was good to see him eat it all, even the yoghurt, which I thought he didn’t like. I thought when I saw him on Wednesday that he needed help with feeding, but then he was determined to try to do it for himself. When I walked in the nurse asked me if I would be feeding him. I jumped straight in there, even did the “open up for the Red Baron…” It made him have a good chuckle, so he seems to still have some sense of humour. All of his food is pureed, and he has nectar instead of juice, as he is having difficulty swallowing and not chewing well so he’s at risk of choking. The last time I fed him was when he had his heart bypasses. He’s good about it, but I suppose he has no choice. He looked exhausted after that, so we just hung for a little while and then left so that he might have a sleep. Sleeping through this might just be the best possible thing for him. Our bodies do all their recovery work while we are asleep, so I’m sure it will help with his brain injury.

It does sadden me to see Dad like this, but I’m trying really hard not to dwell on it. I’ve been keeping myself busy as much as I can, doing lots of housework and yard work, reading whenever I’m sitting for a while. I just find that if I don’t keep occupied, I start worrying about things like “what if he doesn’t get any better?” and all the rest. Of course, this doesn’t do anyone any good, but we all know how the brain gets. Being the person that I am, my mind can get pretty dark sometimes, and can stay there for a long time if I don’t keep it all in check. I do have a good psychologist, and I will go back and see him if I feel I need a brain tune-up to cope with all of this. So far, I’ve been travelling okay. I nearly had a good cry about a week and a half ago, but I snapped myself out of it, because I just kept telling myself he’s just sick, he’s not gone so there is no need to cry over it. I know I probably will at some point, I would just like to be in private when it does happen. MOTH is amazing support, but some tears need to be shed alone.