It is time to introduce you to my Fella. His name is Terry, and we have been together for about 25 years.
I am introducing him now because our lives are so twined together it is impossible to write about my current life without details about him too.
When I started blogging I considered Terry’s privacy. I am sure we have all made decisions about how much information to give out about our loved ones. After all, they are not the ones that signed up for this blogging adventure. So Terry, as the Fella, stayed in the background.
The other consideration for keeping him more anonymous was that this was my space, where I could blather on about whatever took my fancy.
However, as I mentioned in the last post, Terry is very unwell. The decline really hit in 2019, and since then there has been one incident after another ~ 10 hospital visits for various reasons over those 3 years. In that time my life has shifted to being a carer. It’s not the life I want, but do willingly, and mostly with patience and love.
I will write more posts about what’s been happening, but for this time I want to give thanks for the amazing care that Terry has been given from our hospital system.
We hear so much about our medical system being at breaking point. For those of you who don’t know, the funding model in Australia, Medicare, covers all of the cost of public hospital services. It also covers some or all of the costs of other health services, like GPs and medical specialists. The funding is provided by Federal and State budgets.
What this has meant for Terry and me is that he has been able to access world class health care largely without cost.
So the system is under great strain, but there was no evidence of this in the care he has been given.
In November he was admitted to the Royal Melbourne Hospital (RMH). Before this we had struggled at home ~ Terry struggled with lack of energy, difficulty breathing, poor appetite, increased confusion; I struggled with a lack of diagnosis (nothing was showing up on anything the GP could test), and caring in a situation in which I was floundering. It was really hard.
For two weeks Terry was at the main RMH campus in Parkville, where they diagnosed chronic heart failure. His heart is only working at 20% efficiency. No wonder he feels breathless and tired.
Then he transferred to rehab at the Royal Park campus. Two weeks in the main part and then transferred again to a secure ward. You see, Terry also has vascular dementia, and suffers from hospital delirium. This last ward was the right place for him. He had his own room with a large window that looked out onto a garden. The day light would stream in, important for dementia sufferers. There were only seven patients, so way less noise and action than in usual wards. The staff were well trained and experienced with dealing with people with cognitive issues. And it was very secure. You can imagine how reassuring I found all that. I give thanks that he was able to access this ward.
However, in each ward every nurse, doctor and allied health staff was patient and caring. I really appreciated that they treated Terry with dignity and understood the cognitive stress he was under while in their care. There was never a sense of the pressure they must be under, being short staffed. There was never a sense that Terry’s bed was needed for another. And for that care I give many thanks.
Just before Christmas Terry was able to come home. And the support has continued. He was able to get a place in the RMH@home programme. This has been a game changer. It has given us a safety net. Technically Terry was still a patient of the RMH, so services were still available to him.
Each day either a nurse or an allied health practitioner ~ physiotherapist, occupational therapist, dietician, podiatrist ~ has visited. One day we had three come, and a phone call from the doctor, as well as a visit from the nurse on Christmas Day. There is 24 hour phone number.
The help has been practical things. The OT suggested moving the bed over to make room for the walker. (How obvious, but I hadn’t thought of it.) I mentioned that getting in and out of the car was a struggle, so she gave us tips while supervising Terry. The physio set up an exercise programme and has come to help him go through a few sessions. The nurse takes blood pressure etc, and checks in to see how we are travelling. The podiatrist changes the dressings on his feet. I have done that often in the past, but I am grateful that it is one less task at the moment.
The main help has been the reassurance, that someone is there. As I mentioned earlier, before Terry went into hospital I was struggling. This time I understand what his needs are and how I can help. It’s not always easy, and things change from day to day, maybe even hour by hour. However I am getting more sleep, and I know that there are options if I need to reach out.
And for that I give thanks to the wonderful people who are supporting me. I have been told that places on this programme are as rare as hen’s teeth, and only through the RMH, not other major hospitals in Melbourne. I firmly believe that it should be funded more widely and available for all. So I give thanks that we have been some of the lucky few who have been able to access this programme and have the right care, for both of us, at the right time.
You may wonder what happens when the RMH@home ends. Well, it is designed to be short term, a week to 10 days. Terry will be discharged today, but then move onto another wonderful programme run out of the hospital, the Transition Care Programme, before finally accessing his My Aged Care funding. So the support and the safety net continues to surround us. And again, for that I give thanks…..and breathe a huge sigh of relief.
I also want to give a brief mention to my wonderful friends and family, who are also great supports to me and Terry. Brief, because I want to write more about them at another time.
I respectfully acknowledge the traditional custodians of this land on which I live – the Wurundjeri Woi-wurrung People of the Kulin Nation, their spirits, ancestors, elders and community members past and present. The land always was, and always will be, Aboriginal land.
26 replies on “I give thanks”
Anne….I want to reach through the wires and give you a huge hug. The Offspring and I are [still] self-isolating otherwise I’d suggest a nice latte somewhere close to your house so you can get out but still be within easy reach. Maybe one day we’ll both manage that.
I’m more glad than I can say that you have help, both medical and emotional. Few people understand how caring for someone with dementia isolates the carer too. I experienced it with Dad.
When things get tough and you can’t/don’t want to talk to family please send me an email and know that I’ll understand.
nikkojii at triptychacf dot com
Much love,
Andrea
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I can feel your hug, Andrea! And we will meet up for coffee, promise. Thank you for your understanding, and the email address. Sometimes it is important to have someone slightly removed to off load too. Caring can be isolating ~ it is rather like being back in lockdown, without our daily walks to get the take away coffees! The new programme funds some respite time, which I will take advantage of.
Hope 2023 is a good one for you.
~hugs~
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Take whatever respite you can. And do NOT let your own health slide. It’s so easy to do when energy is always needed for other things. I was diagnosed with cancer 4 months after Dad died. I’d neglected myself for 5 years. I was one of the lucky ones -knock on wood- but stress does terrible things to your immune system.
Anyway, I have a feeling you know all this so I’ll stop playing Mum. Just remember there are a lot of us ready to help. -more hugs-
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Thank you for wading into the complex nature of declining health, needs, and care, as well as some of your personal challenges. We have had a challenging year of health issues too and it is difficult to explain as the ramifications change daily, as you have expressed. My sincere wishes to you and Terry for peace and grace as you cope with the changes.
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Ardys, I hope your health issues have been met as well as ours have. However, I suspect that the isolation of Central Australia would make that quite difficult. Thank you for your lovely wishes ~ peace and grace can be in short supply at times!
All the best to you in 2023. I hope it is filled with lots of pastel paintings.
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I am staggered that all of this struggle has been kept totally under the radar. It’s always been very clear that Terry’s privacy is to be respected, but I don’t think any of us realised how much pressure you have been under, willingly undertaken or not. Dementia of any kind can be frightening and confronting as we watch our loved one change and become more dependent on us, and you have clearly navigated a path for you both with determination, persistence and dignity. I give thanks that there are people like you in the world, and pray I will never need such love and compassion for the same reason.
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Kate, it is rather like the boiling frog…it sort of creeps up on you. I got to a point in October where I knew I needed to get more help, including seeing a psychologist. Recognising my emotions and understanding that it’s okay to be upset or frustrated or angry was very important. Since then I have tried to be more open with everyone about Terry’s health and my needs.
I strongly agree about wishing never to be in this position myself. And I adamant that when I need care I will not expect it to be done by a loved one.
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special long distant hug from across the ditch – getting the diagnosis or diagnoses certainly helps the understanding – even if Terry (the Fella) may not grasp it all…
I’m glad that you the “carer” is also being cared for – so many times the carer is not thought about at all – and expected to just soldier on – both physically and mentally – all care much love
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Thank you for the long distant hug, Catherine. I know you have had to navigate your own medical issues, often without the back up of someone else. So I really appreciate the hug!
There are big expectations on carers. However, the alternative is residential care. That might have to be where Terry goes, but not until it is impossible for me to look after him. So yes, I need to look after me.
Have a healthy and creative 2023, Catherine.
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That is a wonderful tribute to all the health care workers and others that are supporting you and Terry during this challenging time. I am sending many positive thoughts and I am glad he was able to come home. I hope 2023 is a bright time for you and your fella!
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I can’t speak highly enough of them! Nor of the structures that are in place to provide support, even in a struggling health system.
Thanks for your good wishes, Tierney. I hope that 2023 is a bright one for you and John too…and one that is full of your beautiful art quilts!
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Anne, you are truly a warrior! So many unknowns, questions and fears, yet you are gracious and kind, paying tribute to those helping your dear fella. May 2023 bring you and Terry the support, rest, and care you need. Sending you a big warm hug, and prayers for continued strength and grace as you navigate the system and care for Terry.
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Strength and grace can be in very short supply at times. So thank you Kathy for reminding me that they are such important qualities……along with taking a big, deep breath!
I hope 2023 sees you with good health with your lovely family.
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Thank you Anne! DH has been mostly stable for a year now, and is getting very good at catching himself on the early side of trouble, which prevents those nasty and scary episodes. I am so grateful!
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How reassuring for you. Long may it last ~hugs~
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You have done a wonderful job at writing this post to share your updated circumstances… it is a lot. I remember a while ago you mentioned you’d contacted Victoria carer support… being open to getting support and actually reaching out is the most important skill to have, carer or otherwise. The other is sharing what you find so that others are informed and inspired also. Both are often the difference between difficult circumstances and impossible. I’m so pleased you have professional and personal support networks, and that you thought as well to reach out to your other friends even though we reside too far away to be of practical assistance… know that you both are cared for and we are here in whatever way we can. If there’s anything, please get in touch ♡
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Reaching out and opening up were big things for me. I now know that I can’t do this alone. It takes a village to raise a child, and I am learning that it also takes a village to support our elders. As you say Dale, support can be the difference between difficult circumstances and impossible ones. Thank you for your understanding and support. I know it comes from your lived experiences too.
I hope your 2023 is a healthy one, full of good food and walks along the beach!
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Oh, Anne, I’m so sorry you’re having to go through this…and Terry as well. The vicissitudes of getting older…I fear them much more than death. I am glad at least that you’re getting plenty of help. Sending loads of virtual higs and positive energy. Much love, Marina
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Somebody said that aging was not for wimps, and that is so true. It is hard work! I often wonder how people cope if they have no support networks or can’t find their way to support organisations. Thank you for your good wishes, Marina. I hope your 2023 is filled with art!
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My heart goes out to you Anne. My lovely John had heart failure and caring for him was hard but with dementia to cope with as well you must have been living a nightmare! However much we love them being a full time carer is hard work and very restricting. I am so glad you have found both a diagnosis, which at least makes it all make sense, and professional support and advice. I can feel your relief! I hope that you are also getting care for yourself – it is easy to become isolated when you are a carer and to end up always putting yourself second which actually is not helpful to either of you. Big Hugs coming through cyberspace. Sue
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Sue, I am sorry to hear the John also suffered from heart failure. Getting a diagnosis was a big relief, even if though we never want our loved ones to be unwell. I know which way I am facing. As you would know, Sue, there is little medically they can do. So I am limiting his fluid intake and helping him to do some exercise.
Thanks for your hugs. All this cyber support has made me smile! Good wishes for a healthy 2023, Sue.
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How very difficult this must be, must have been for quite some time, especially before having a definitive diagnosis. My heart goes out to you and Terry, and know that you are in my thoughts. I am so very glad, though, that you have such a good national healthcare system! Here, either you would be in debt to the tune of hundreds of thousands of dollars by now, or else would have been denied treatment. Take care of yourself, as well, my friend, and I’m sending you a virtual hug! (Too bad I won’t be able to join you and Andrea for that coffee one day soon!)
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Thanks Jill. It has been difficult at times, and I know there will be more of difficult days (and nights). I can feel your hug from here! We are so fortunate to have such a health care system. There are many problems with it as it is under great strain, but I can’t imagine the dilemma of choosing medical treatment/medication or food/rent/clothes for the kids etc.
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I’m glad you received my hug! Sometimes they get lost over the big pond! Take good care, my friend, and know that you are in my heart and thoughts.
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[…] Last time I wrote Terry had come home from a long stint in hospital, and I was caring for him, with lots of support from many wonderful people. This continued on through January, until he had to go into hospital again. Despite my best efforts and despite all the help we had, I knew I couldn’t look after him at home any more. So he moved from hospital into residential care. […]
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Anne I’m glad to have circled back to this post about Terry’s decline and the nature of your day to day struggles. I’m so sorry. Caregiving is exhausting work, often thankless and relentless. I’m glad you are getting help and support. I think most of us, if we could choose, would like to exit the world quickly and with minimal suffering. The slow descent is brutal. xo
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