Days at Home

Well, back from the hospice and finding things very different. For example, I can't call a nurse when I need one. I can ring Leanne of course, but she is a problem she gets to me without a grumble, but once awake she finds it difficult to get back to sleep. Nurses do things in shifts so they are always available (mind you they can be found to grumble from time to time - it's probably because they are doing a double shift) I simply have to invent a way for getting through the night without assistance. Sigh!

Meanwhile, just for the nursing staff at the hospice, the dressing CAN be changed to a Statlock I now know this for sure because we did it today. Now all I have to figure out is how to clamp it off when required. At the moment we are trying my iron grip in a pinch.

We attended the 3 monthly review with our oncologist and he indicated that my bloods are better, not perfect, but better. That was pleasing, however when I jokingly asked if I was cured he gave me a fixed stare and advised I should be glad I am walking around. THAT was sobering!

Went to quickly meet up with one friend who works across the road at TCH and then it was home.

My hand is at present my sorest point and the drugs for keeping this pain under control are not working well, will have ask about increasing the dose or ???

We have been watching the news and seeing our superannuation going to the dogs while being amused by those ads on the TV that advise people to put their savings into superannuation. All this while at the same time we note how people in situations like mine need some hoard of cash to pay for medicines. Just two boxes of stuff are well over the $100. If those pharmaceutical companies get into problems as a result of the financial crisis I guess they will just raise their prices while we who need them, just have to pay for the privilege of staying alive. "It is always thus" says some sad voice from the ether behind me.

I think I will call it a night and get some sleep then on the other hand Marmaduke or whatever we are going to call the new pole on which hangs my feed will not be ready for hours yet. Sigh!

For those of the Jewish faith who are reading this blog Happy New Year!

Now to sleep, perchance to dream . . .

Retrospective - Part 5

You all know who you are and all I am allowed to say is "Thank You, It has been a pleasure."

Retrospective - Part 4

I have not been adding to this blog for a reason (or three). I have discovered that hospice life can be quite busy, leaving little room for little pleasures like writing a blog. No I am NOT referring to the life of the staff, although I suspect the criteria apply to them as well. I am referring to patients.

In my case I wake by at least 6:00 am. This is normal for me and is not the result of some awful tearing pain or mishap caused by medication. Though I have to say that for other inhabitants this may well be the case.

Having woken, if I am not assailed with a desperate need to clear my bronchi, nasal passages or some other part of my anatomy I find that I have time - usually only a few minutes - to rush to what is known as the Family Room where the hospice computer is located.

Here, I have just enough time to check my email and deal with it, before one of the nursing staff locates me and tells me that I have to have my early morning 'meds'.

If the timing is right then there is a chance, just a chance mind you, that the bottle of feed to which I have been attached throughout the night, has run its course and I can be unattached from it and start my favourite time of day at the hospice, the time when I am FREE from any attachments and have to endure only two more rounds of medications at 8:00 am and mid-day. Then it's a hook-up once again to the machine that feeds me, provides my drink and allows medication to be provided to me - the PEG between 1:30 and 2:00 pm. The PEG is simply a tube that has been inserted into my duodenum, (the stomach not being where it should be,) and then secured in place by some ingenious dressings.

'Henry' as I would like to call this appendage is both vital to my well being, but also a nuisance and a worry. The worry being that if it slips out and for some reason cannot be replaced I am 'cactus'.

Still at least at this point, if all is right with the world, I can look out of my window and observe the fish that are jumping (no doubt for insects) and the other water birds going about their routines. For those who are not early risers let me just say, you are missing a really lovely time of the day when all is still, until the morning madness of the rush hour starts at the very periphery of vision on the roads and at the airport.

By 8.00 am I am usually called for my main round of Meds (medications). One of the nursing staff assigned to that part of the building where I am located is the 'chosen one' for the day (and generally for a few days thereafter) to administer the medications and then when this round is completed perhaps assist me with my ablutions. Yes folks, my illness and its ramifications are reducing me to a state of disability and a state where I need help with washing my hair and the rest of my corpus as well. Sine the advent of a loss of functionality in my right hand and arm I need assistance to be able to do the things that can generally only be done with both hands and of course with things that can only be done by the right hand.

I digress.

If the computer terminal is free I can continue to record the events on the blog, until my work is interrupted in the most delightful way by one (or more) of the volunteers. It is generally a welcome interruption and one that I have learnt to take advantage of.

What a wonderful, dedicated and diverse bunch of men and women they are (or in inverse order women and men - I will not have it said that I am sexist)

There seems to be a volunteer here from most walks of life and because of this, engaging in conversation with them provides an opportunity for both parties to learn things about each other of course, but often also about things in the world that, were it not for the encounter at the hospice, I would never have encountered. Perhaps for some of the volunteers, a similar experience arises when they hear about my interests and experiences.

I don't know anything about their training by Palliative Care Society of the ACT, but I am sure that by getting in touch with the organisers, anyone who wishes to consider participating as a volunteer can find out more.

Were it not for them, staying with and just being there, I am not sure I would have survived some of the nights I have had when the effects of the illness in combination with the medication have left me feeling really out of it, scared out of my wits, helpless and very vulnerable.

I hope to be able to feature photos of just some of the wonderful people I have met during my stay at Clare Holland House when I get back home to the equipment that will enable me to undertake those functions. Anyone featured will have been asked for their permission to appear on the site and the vary fact of their appearance will indicate that they have done so. For those whose photos I have not as yet been able to take - please pop around -alas on the weekend - and I will try and get your photo included. To those whom I have encountered to date, thank you I have really valued the contact and your assistance.

If anyone out there in the public has had someone in the family for whom they have cared and who has been in the hospice, please post comments to this blog and tell us all what you encountered during that time. In this way you can also decide whether you wish to remain in touch.

I will be going home soon and I know that I certainly want or at least would like to be able to stay in touch with some of the people I have met at the hospice and if they wish to get in touch with me to write to me at pgaras@google.com or look up this web site for on going material at www.garpet1.blogspot.com .

This is all I have time for today (or at least now) as my 2:00 pm Meds moment arrives and I welcome back my connection with 'Henry'.

When you are writing these stories, sometime after the events that took place here, it can be a little difficult to raise enthusiasm for the effort required to put the fingers of one hand to work on the key board. This is especially the case when I receive feedback only from a few of you, either in person, (by means of a visit to the hospice) or in writing either by means of a letter to me as the editor of the blog or in person if you know me or as a comment to the blog. For those of you who have managed to write, thank you.

Of course occasionally I do get some really bizarre feedback, as was the case this morning, when I received a note seeking my comments on the American debate between Obama and McClain camps about American Health care.

So I will tease your interest even further than normal by including the exchange as my contribution today instead of an article about what goes on in the hospice

Herewith the exchange with my reply first to the lettter that popped up in my in tray.

Dear Marjorie,

I am an Australian.

I have little knowledge of, or interest in, your health system, I am sufficiently involved in dealing with Australian issues (including my own) to have time to to learn about, much less write about the mess in your country.

All I can perhaps add to the debate is perhaps a very tongue in cheek comment, that those who are still looking for the land of the 'free' need to find 'the home of the brave,' because their search is likely to be a bumpy ride.

I have however forwarded a copy of your note to some other people I know who may have more time to assist you even though they too are from Australia

PG
Editor
Pete's Pages
Written from Care Holland House

2008/9/22 Marjorie Saenz
- Hide quoted text -

Dear Pete's Pages, Administrator

The topic of health care in the 2008 U.S. presidential election is one that is high on the minds of Americans. However, while most people are well aware of the immense challenges facing our health system (rising costs of medical care, malpractice, high prescription drug costs, medical bankruptcies, employers dropping coverage, 47 million uninsured Americans, etc.), they have less understanding of the specific solutions proposed by Senators Obama and McCain.

We invite you to write a post about the topic of health care in '08. There are clear policy differences between the Obama and McCain plans, who come from two differing philosophies on health care reform.

"HealthDecision '08: Obama and McCain on Health Care" is an initiative by HealthCare.com (http://www.healthcare.com) to help potential voters understand each candidate's position. It is an objective comparison of the two platforms, and provides analysis as to the strengths and weaknesses of each. Most importantly, HealthDecision '08 provides an interactive voting tool that allows users to "vote" for a preferred plan. HealthDecision can be accessed at http://decision.healthcare.com/obama-mccain/.

HealthDecision '08 will provide you with much of the primary research with which to form a post. In addition, we provide you with links to third-party election coverage from Health08.org, NPR, The New England Journal of Medicine, NY Times, National Journal, U.S. News, WebMD and many other sites, that may serve as supplemental information sources.

I hope you'll join us in our effort to raise voter understanding on this very important issue. We hope that you will use our information, and also link your readers to our site in order to have their voices heard.

Lastly, if you're interested in posting real-time results of the HealthDecision '08 poll, please reply to this email for instructions on embedded our widget onto your blog.

Thank you.

To your health,



Marjorie Saenz
HealthCare.com
http://decision.healthcare.com/obama-mccain/

A Retrospective - Part 3

We left the adventures at the hospice at the stage where Leanne was going to go home to get a good night's sleep and then having packed the car with all she would require for her respite period, drop in on me at the hospice in passing.

As for me, my first night was filled with trepidation.

Would the nursing staff be able to handle my sense of humour this being a difficult enough thing for people not under pressure in their work? Alternately could I cease and desist from using this 'feature' of my personality for the duration?

Could they manage with all the complex instructions that had been provided by Leanne (soon to be captured in a 30 page booklet)?

How would they adjust to the 'requirement' stated in the booklet to feed each medication separately with commentary on what each each item was called, what it was for and then ensure that the system was flushed both before and after each item of medication was given. This practice being designed by Leanne to ensure that I received sufficient fluids to help deal with the presence of too much urea in blood tests.

Would people remember to add two sachets of salt to the 'food' being delivered through the peg tube ensuring that the levels were right?

Aside from this, the realisation hit with stunning force and suddenness, that while Leanne and I had been separated for long periods of time in our time together over the years, this was at a time when both of us were 'healthy' (read independent and mobile with the use of all our limbs and faculties).

During the lead up to this stay at the hospice my condition (read physical and probably mental,) had deteriorated to the point where I was unsteady on my feet to the point that I had actually fallen over once and had tried to walk and found myself unable to do so without the aid of the walker and then only for short distances (the length of the hallway connecting the rooms in the house in which we live, being the distance referred to and, unable to communicate because I ran out of air trying to form and state words without my vocal cords operating adequately - and sometimes at all.)

In short, at home, with each passing day, I felt as though I was becoming more and more dependent and frankly, scared of being alone in case anything happened that I could not handle.

We had been taking care of this reality by using the services of volunteers who were kind enough to mind me and look out for me while I lay in bed requiring additional pain medication and really being out of it and generally unable to even communicate with them. Their presence enabled Leanne to meet with friends, find some hours of time away from the grind of dealing with my needs all the time and having access to some life outside of that.

In recognition of this situation and state of affairs, I am embarrassed to report that I asked if it was possible for a volunteer to sit with me. This was made possible and I want to use this opportunity to thank all those who made it possible. I also regret to report that it had been a long day and I was exhausted so the land of nod found me to be a willing and capable resident. I slept through the night waking only when the calls of nature required and recall feeling tremendous guilt along side the gratitude when I saw my 'guardian' perched in one of the chairs with a hand knitted shawl to keep her warm. Thank you!

More to come. (Note: when this has been read andd approved by the hospice management.PG)

A Retrospective - Part 2 Arrival at the Hospice

Gear packed along with our (read my)anxiety, we arrived at the hospice.

If there was paperwork, I was not aware of it, I was only able to take in "my room."

This is at the end of a long corridor and (I was to learn later on)one of the later additions to the place, thanks to generous donations that helped to convert a four bed ward into four separate private rooms.

What a room!

It is equipped with mod cons that I do not have at home. Just think, a hospital bed that can be raised or lowered in three places, a flat screen TV a HUGE en-suite with every aid to the infirm you can imagine, a bar fridge and of course cupboard space for your clothes WITH coat hangers, a reading light, and, wonder of wonders, a balcony that you can reach via your own sliding door, equipped with two metal garden chairs and a matching table.

Marvellous!

What people should know is that the location of the place is in itself a miracle of sorts. Set on just a small part of the lake that is the heart of Canberra, the view from "my room" is spectacular. A part of the lake foreshore with two black swans from Western Australia majestically gliding on the surface, seemingly the owners of all they can survey until they have to feed. It is at this time that they come close to the shoreline and bob their long necks underwater until there remains only the view of their nether portions, with two webbed feet scrabbling comically for balance and depth.

Other denizens of this vista, include ducks and their cute little ducklings, magpies that swoop on a crow that seems to have passed into their territory, rabbits everywhere along the banks, with at least four burrows immediately identifiable and at least three or four sets of loving pigeons.

The birds that really draw your attention though are superb wrens and some finches where the male of the species is coloured red around the head and neck. There is more wildlife and some cattle wandering around, but frankly, this is all I could see and name in the brief moments I had after arrival.

We settled in.

My gear was unpacked and stored in the cupboard and the bedside set of drawers I seem to have overlooked in my inventory above. The medicines that were brought from home were strategically placed within easy reach and once again it was explained to me what was where. The controls for the bed, TV and other things were explored until I was familiar with them and then my loved one and I entered what I will refer to here as the "separation and departure phase" of arrival at the hospice. We hugged to ensure that we knew what we would be missing (each other in case anyone needs a hint) and said our good-byes. This was made a unique situation by the fact that for the first time in my life I honestly think I understand the meaning of that American phrase "missing you already."

Leanne decided to delay her departure for another day just to see how I would manage without her.

Leanne left and my adventure, my sojourn commenced, albeit with the proviso that I would see her again the next day.

None of my pre-planning or even simply thinking about what it would be like to stay at the hospice prepared me for what was to come next.

"But that's another story" as the barman said in "Irma la Douce."

A Retrospective - Preparation for the big move

Having finally found the computer terminal in the hospice, learnt to log on, recall my password for the blog etc with great difficulty, through a fog bank of induced memory loss, I stared at the key board, formerly my friend, now my challenge, and then started to compose, this humble and meagre offering.

It attempts to be a little "retrospective", exploring feelings 'views' and incidents or events about coming to and staying in the hospice - later contributions will try and explore snapshots of life in the hospice ......

Coming to a hospice in a palliative care setting is quite a traumatic thing to do. At least it was for us.

Days of mental and physical preparation are required and both Leanne and I had work to do.

Alas I did not want to go so I am afraid that at the time my condition was such that I could well call upon it to explain why I was work shy. My contribution was negligible and really lacking any substance.

Miracle worker that she is, Leanne was able to handle the decision making and associated workload with aplomb while I gibbered with fear at even the prospect of being severed from my safety lines, the familiarity of our home, the incredible levels of personal care provided by Leanne and the unfamiliarity with the hospice settings and its facilities for caring for me and my needs.

Leanne, bless her heart, prepared a "book" for the staff at the hospice outlining my personal and medical needs accompanied by a list of the medication to be taken along with information on when it needed to be taken (for example, if there was a time dependency for a given medicine or a need for one medication to be taken with another so that the impact and efficacy of both were to be enhanced)

All in all a brilliant effort and one to be considered by others.

In the lead up to arrival at the hospice much time was spent, this time by both of us, sharing our misgivings and stating them out loud. There was also time for reflection about the real need for Leanne to have real "Time Out".

We discussed the workload she had shouldered because of my illness and our relationship, a workload that it would now take shifts of nursing staff along with other allied health professionals and shifts of volunteers to undertake.

It was in truth as plain as the nose on my face that the rest was required and nothing my selfish brain could invent about MY needs could even start to compete for attention.

Finally dates were picked, arrangements finalised and it was off to my new 'home' for two weeks.

Leanne was I think in a dreadful state, largely due I feel to my selfish fears and anxieties about the new circumstances and her other real needs to visit with her family and have 'time out'. For this I apologise. I hope I have learnt my lesson and will do my utmost to resolve issues like thiss early. I am afraid I can't promise not to be selfish, the bet I think I can do is to recognise when I am selfish and then deal with it - quickly.

I can only suggest to others, based on my experience to do the exploration and sharing of feelings. These were great value and very useful.

Funeral advice

Folks,

Just a quick note.

I am led to understand that the funeral of Leanne's father will be on Tuesday next, so if you wish to have your condolences conveyed to the family, the window of opportunity is tight.

It is my expectation at this point that Leanne would wish to have more time out after the funeral and I have some ideas about how long this might be, however they are my ideas and so need her input. I have asked the hospice administration if they could extend my stay and this request will no doubt be passed up the line to wherever decisions are made. I have also told the administrator that Leanne is likely to come back to Canberra to get clothes to wear for the funeral so there may be an opportunity for a face to face discussion to take place. I expects that this is likely to happen on the week-end.

From the Hospice

Folks, I am sad to say that I am having to try write to this blog myself for the time being, because a most devastating event has taken place that prevents Leanne from continuing her stirling work.

I regret having to be the one to let everyone know that Leanne's father, Colin Sales passed away on the weekend in what appears to have been a bizarre accident at the family home. What's even worse is that Leanne was the one to find him and so have to deal with trying to revive him, call for help and so on.

I am sure that all of you who have come to know Leanne, will want to send your condolences and best wishes to her.

I guess one way you can do this is via email to me (pgaras@gmail.com) I will pass on your messages as best I can to her.

Of course if you would rather send your message to Leanne's in box (leanne_sales3@hotmail.com) and just send a copy to me you will be able to ensure that she gets a personal copy when she is once again in a position to read and to respond to emails again.

I have access to a terminal from here so I can try, when I am well enough, to read and respond to your mails as they arrive.

The news has other implications for my situation and will mean a more extended stay in the hospice than expected. This however is of far lesser importance than ensuring that Leanne is OK

Col was 83 and probably the heathiest of all the family. An amazing man of many talents who is missed greatly by all of us who had the priviledge of knowing him. Personally I can tell you that the news has left me somewaht shell shocked with disbelief.

More when I can persuade the fingers of my left hand to do some more work.

Peter

Peter is in the Hospice

Hello all - as agreed, I am writing this quick up date to let you know that at 8.30am this morning I rang Clare Holland House and they had a bed reserved for Peter.

So it took me from then until 1.30pm to get Peter, washed, dressed, medicated, packed, and generally organised and we got to the hospice just before 2pm. He has a lovely room (Room 10) overlooking the eastern view of Lake Burley Griffin and has his own bench in the sun out through the sliding glass door. It is a lovely view! I stayed with him until 7pm, completing all the admission documentation and inducting the nurse into the arcane issues of Peter's health and how his feeds have to be done etc. I have taken in his favourite mohair blankets and pillow, remade his bed to provide a "low-sweat" environment with the vinyl covered mattress covered with a cotton blanket, spoken with the doctor, unpacked and adjusted things for him to be easily reached and organised for a nebuliser and oxygen to be at his bedside. I am hopeful that all this will make him feel more secure.

I know Peter feels a sense of abandonment but I have told him that is not the case and this respite is to let me have a break so I can keep on caring for him and also provide time for me to see my family. I left him tonight with 2 nurses offering to massage his feet and rub his back, to which he agreed, so I hope that he has a positive night.

Tomorrow I am taking him to see the Ear, Nose and Throat specialist as we were lucky to get a cancellation, so I will spend more time with him tomorrow and then head up to my parents on Wednesday.

While he is not feeling 100% I think he would appreciate visits from local friends as I think he is worried he may feel lonely from time to time, even if he is not able to talk a great deal. I understand that visiting hours are not fixed, but Peter is probably better during the day than later in the evening, for anyone wishing to visit.

Anyway, I will write again if there's anything of interest from the ENT specialist or later when I return from my parents if there isn't.

Thank you for your emails and phone calls - all of which are very much appreciated even if I don't reply. Cheers for now - Leanne

A slightly better week

This week has definitely been better than last week, with only a few occurrences which were of concern.

The antibiotics seem to be clearing up Peter's chest infection this week, with the coughing and sputum being greatly reduced. He is currently on the 3rd continuous antibiotic prescription which ends on Tuesday and I really hope this will be enough to get rid of the infection for good. However, the side effects are that he feels dreadfully nauseous and sick and that makes him very miserable.

However, the pain has not decreased much and I have increased the number of times he has paracetemol and codeine to assist and there has been some limited success there but only for an hour or two. The pall care specialist was keen for Peter to come into the hospice this week because his medication is not well adjusted at the moment and they also had a bed available but Peter declined on 2 occasions. On Wednesday his right hand, was swollen and bluish purple at the fingers and I was concerned the fluid was either related to medication side effects or circulation problems. Another call to the pall care team and Dr Pacl called our GP who visited at lunch time and suggested that it was all to do with the nerve damage and something called RSD (which sounded reasonable at the time but as I didn't write it down I now no longer know what it is). So nothing much to be done there, perhaps raising it so that the fluid drains and that's about it but definitely not a drug reaction as that would have been in both hands. As previously mentioned the right arm is now entirely without function and is as if Peter has had a stroke. He can't do much with it at all and the hand won't close, the fingers don't work and he finds it incredibly painful (major pins and needles all the time) and distressing.

In the early hours of Friday morning, after a toilet break, Peter felt he couldn't breathe properly and despite me providing him with the nebuliser and ventolin and doing all the things he needs, he felt I wasn't doing enough and was putting his life in jeopardy. So I rang the 24 hour pall care line and they advised me to do as I was doing, give increased oxygen saturation and administer hydromorphone. Peter also talked to them but wasn't happy with that and wanted an ambulance, so I called the emergency number and after discussion and advising them of the situation they spoke with Peter and reassured him (he was in fact breathing okay, if a little laboured and speaking in full sentences etc). So the "link" team nurses came out about 3.30am and by the time they came to see him and I had done all that was suggested, he was calmer, breathing well and the distress had faded. The trouble is that at night Peter gets more worried and distressed and this can escalate, as it did the other evening. I don't blame him as when you are so sick and your nose, throat and chest are all feeling constricted or blocked it's a very distressing thing.

On Friday, during business hours, I rang to try to bring forward the appointment with the Ear Nose and Throat specialist as the restriction in his throat seems to be getting worse and I think that's the thing that frightens him most. I am hopeful there may be a cancellation appointment tomorrow that we can have so we can ask the specialist to look down Peter's throat and see what is happening and whether something can be done to assist him.

Apart from these eventful moments, I was able to go out for a couple of hours on Tuesday and met up with a friend who has moved to Canberra from Darwin with her husband. We had a lovely time albeit it was too short and a bit rushed.

Spring has arrived - pink blossoms on the fruit trees, weekly clothes wash that actually dried outside in the fresh air and we have planted a new Fig tree (Black Genoa) which I hope will thrive and yield lots of fabulous figs in a couple of years.

I have also been trying to get organised in case a bed comes up in the hospice (Clare Holland House) next week, as they have booked Peter in for up to 2 weeks so I can have some respite to visit my parents. Apparently, tomorrow morning I will have to phone to see if there is a vacancy and if so I will take Peter and all his equipment in by early afternoon (as it will take me that long to get everything organised). If there isn't a vacancy then we will meander on as usual here at home.

Peter is not pleased about going but is keen for me to see my parents and have a few days off from the 24 hour care, so he knows there's no alternative. I know we will both miss each other desperately as we have only been apart for no more than 4 days in the past 13 years, but the thought of a night of unbroken sleep, as well as my mother's cakes and chicken roast is a great lure, not to mention playing with my 7 year old niece and hearing dad's stories about the old days - they are all compelling reasons to find some time every now and again to spend with them.

If Peter is admitted to the hospice I will post another message in the next day or so. If not, look out for next Sunday's news. Best wishes to you all - Leanne