A comfortable place to die

As I have grown older I have came to realise that there aren’t many guarantees in life. The only certainties in life are birth,death and change. We are born, changes take place and we die. To make things more pleasant all round and something we take for granted in the United Kingdom is that we will always have somewhere to go when we are sick. Get taken care of free of charge and when the inevitable happens are granted A comfortable place to die.

When a person is faced with a terminal illness, at some point thoughts come racing in to the mind where do you want to spend the last days. People’s answers are very personal ones. For some being at home and spending every last possible moment being cared for in the family home is their wish. Others prefer to be cared for in a hospice or hospital environment. Either way, the experience I have witnessed personally the care given has always been outstanding. The nursing staff making sure in the last weeks, days and right down to moments comfort is paramount.

There is no getting away from it making a choice where you want to end your days is far from easy. There is an awful lot to consider. However even when all the pros and cons are weighed up and it’s been decided home, hospital or hospice sometimes it just doesn’t go as smooth as you would expect.

We may choose to stay at home and be cared for by your loved ones and supported by district nursing team. Most of the time it goes well and you get your wish and you can stay at home. The district nurse team and Marie curie nurses that cared for my Father in his home gave him a caring, dignified last few days. For that we cannot thank the wonderful medical team enough and will forever be in their debt. Home nursing teams work very hard looking after the patient, ordering drugs, equipment, supplies, communicating with other health professionals. We are lucky to have such good staff working on the NHS, providing us with with amazing service. They are dedicated, take care of the patient and make sure the family are coping too. At present I have the most amazing team of District Nurses that come in to my home and give me injections, service my stoma/gastrostomy tube, change dressings, etc. They also look out for my nearest and dearest.

However for some there can be a time that everything is all set up and there is a spanner in the works and you need shipped off to hospital and you no longer get the home care you so wished for. In a snap decision one of most difficult decisions of your life has been literally taken out of your hands. What we have to remember is things happen for a reason and getting sent into hospital is most likely with best intentions.

When we make a decision to end our days in a hospice it’s a choice that certainly does not come lightly. Whilst you get fabulous care and are in a safe and secure environment, it’s not home. Although hospices have a much less clinical feel than hospitals you can’t quite move your pet in. The biggest problem at the moment is the waiting time to go in. Main reason being there just isn’t enough palliative care beds to go around. It’s heartbreaking but the practicality is that we are actually waiting on someone passing away to then offer a bed. In the UK we get used to getting our health care and this includes all our cancer treatments free of charge. All us human beans in UK take our health care for granted; go to the doctor and don’t think about the cost. Many people think more about putting money away vet bills for our pets or saving for a holiday than donating to a charity.

Hospices, such as Marie Cure and St Columba’s, home care nursing from Marie Curie and Macmillian are not NHS or big private hospitals, they are self financing. They are charities. Rely on donations and fundraising. They offer their services free to patients who need them, at times it may be respite care where a patient goes in for a few days then goes home, or the nurses go to a patient’s home and takes care of them; gives the family help with washing the patient, changing pyjamas, changing sheets, etc, and patient staying in hospice for life end care.

On thinking about the charities, I believe we need to try and chip in a tad if we can. Next time you are eating that McDonald’s and you are about to have a Mcflurry with it; what’s the cost for the ice cream? Couple of quid? Perhaps think about matching the couple of pounds in a donation, I definitely will.

I’m in my mid fifties and have known people very dear to me that have died by their own choosing at home, in hospital and in a hospice. All very well cared for, and I can see the benefits and down sides of all. For the person that is going to meet his Maker and for those that are left behind. Me? If I mange to get my wish I will not be at home and I will not be a burden on anyone. Let’s hope this works out.

Pick up the phone – Its good to talk

Well one month into 2021 already. Its just turned February. For some its a dark month and many folks find it a lonely difficult time, with thoughts and reflections going through our minds. This year we are still in restrictions, a great deal of people have jumped from one personal crisis to another. There has been so many difficult situations for our fellow human bean to cope with over the last year; we have been tested in more ways than one. I have known a fair number of family and friends who have over the last year fought life threatening coronavirus. During this pandemic many people have faced fear, anxiety, poverty, hardship, social isolation, unemployment, etc.  Now is the time to take notice of who has been helping who, and most importantly does anyone need help. Remember when we used to pop in for a quick chat, or go out for that drink, meet up at lunch time, or a run on the bikes. That person is possibly lonely a missing seeing everyone and could do with a jolly good chat. Do yourself a favour and as the scout or girl guide leader would say do your good deed for the day; Pick up the phone – its good to talk

I think we can all agree that this has been an unusual year.  It has been a difficult time for everyone at some time and we have all be faced some sort of challenge and uncertainty.  I don’t think anyone thought we would still be facing these kind of restrictions in 2021.  Covid-19 has dominated our lives and health.   The NHS and the care staff have taken good care of us since the start. They are dedicated and like true troopers put patients before themselves, work long hours; doing their best to make us feel as comfortable and secure in these strange and difficult circumstances.

From my personal experience my team of medics all the way through this pandemic have been ultimate superstars. My net specialist emails in between appointments to check up on me, make sure how I am doing. My nurses come in to my home changing my dressings, changing the water in my gastrostomy tube weekly, administer my octreotide treatment at home fortnightly, change my entire gastrostomy tube every 8 weeks (however due to problems such as infections, burst balloons, etc its been happening after 5 weeks, 1 week, 3 weeks). My nurses will also come to my home if I have any problems. They are wonderful; my net specialist telephoned me last week when he was on the phone he commended the nurses and said the work they did and how well they looked after me, helping keep the amount of infections down and most certainly assisted in keeping me out of the hospital. The amazing supportive Community Enteral Nutrition Team (CENT) call me regularly. Usually Kat or Marion visit me every two months. They weigh me, check on my peg feed and we discuss how my feeding regime is going. We talk about my quality of life, what is going on with my appointments, my body and everything thats going on in my life. They are very supportive and always at the end of a phone. I can pick up the phone and give them a call any day, if they can’t pick it up and talk to me when I call. Their secretary June will answer, take a message and one of them will call me back, chat with me and sort out any problem that may be going on. They report to my dedicated Net specialist (The Prof), my hard working GI consultant, who works hand in hand with the Prof, and my GP. Letting them know if anything needs changed, such as my frequency of feed, etc. Remember my GI consultant, he is the chap who did the creative drawing when he kindly saw me bang in the middle of covid restrictions and did a wee procedure when my gastrostomy tube fell further into my intestines than it should have. He has to have sense he has labradors.

For some people this will have been a long and lonely year. For others it will have gone quickly and nothing much will have changed other than the physical restrictions, such as supermarkets, going from one district to another, closure of shops, establishments, etc. This time last year I was looking forward to going to Dunedin Chapter’s AGM meeting and annual dance; this is the Harley-Davidson® club that my husband and I belong to. The AGM was actually the last meeting we all got together for an official meeting. Now that the vaccine is getting rolled out, you never know…………. I miss the blether, the friendships, get togethers. However, right now its for our own good, and we have to wait until the appropriate time. A while longer to make sure we are safe is better in the long run. So in the meantime be content with sharing a conversation on social media or a text, email and most definitely a natter on the phone. When director of Dunedin Chapter Scotland HOG® #9083, Stewart Willox phones me and says I won’t keep you Elizabeth, and we are still blethering 20 minutes later. I’m sure the poor chap’s ears are bleeding.

I have been very fortunate over the last year and would like to says thanks to the folks that have kept me going, I wrote an earlier post on being thankful for my smartphone and posts being grateful of support during this pandemic. However, I would like to echo this and let everyone know I more than appreciate the texts (yes minister friend Janice, even the early morning Prayers), WhatsApp’s, emails, social media messages; every piece of contact helps prevent the feeling of loneliness, it makes me appreciate what I have – a circle of human beings around me that care. I so love the photos I receive in texts of my grandchildren, it brightens my life and lightens my heart. Marion and Tony send me the most beautiful photos of Luna, she was born in lockdown, we were privileged to see her Christmas Day and have only seen her via technology since, thank goodness for gadgets. We have round robin texts between Tony, Stuart, Marion, Laura and Myself; all checking in, keeping up with the news and sharing photographs. Pre lockdown both my sons were at our house regularly and our home filled with laughter and cheer. Now our lads call regularly, they FaceTime with the kids which is fabulous, I get time to talk to the boys and chat away with the babes. Nearly 5 year old granddaughter Alexandra loves chatting away at anytime. See how they are developing, here all their news. Never tire of hearing their news, listening to Tony telling of his uni work, and whats going on in the world of government policy at Edinburgh University , or chatting with Stuart as he drives home from a hard shift at the hospital where we talk about all sorts. My sister Hazel and I text message each other every day just to check in. We blether on the phone often, and its never a short phone call. My friend, Jen, we met on the first day at university in Edinburgh when we were both 18. We’ve been firm friends since. We chat every Friday morning at length. I so enjoy these calls and have to admit they help keep me sane.

The last year for me has been difficult I won’t deny it. I have been over the threshold approximately half a dozen times and most of those occasions have been sheer necessity. I so miss being able to ask Steve to drive me over to visit my Dad. I miss going to my support meetings with The Ann Edgar Trust; so miss seeing the friends I’ve made and the support I get out of going. So for now I’m still content with my calls and other means of communications. My daily WhatsApp messages from Louise lets me know I have a loving caring friend, Stephen cracks me up with his comical wit on WhatsApp, he sends me not only messages to ask how we are doing but jokes, photos to make me laugh; he arranges online quizzes that we take part in on zoom. Lindsay Lou messages me with photos of the kids and tales, I so miss seeing them, suddenly Glasgow feels like the other side of the world.

I’m sure you have been affected this passed year in some way. Whether its physically or mentally, we have all been touched one way or another. Family and friends are important, keeping that line of contact is much more beneficial to some than others. What I have taken from this year is, yes it has been trying, but we have to remember restrictions are put in place for our own good and to save lives. During this pandemic a great deal of people have been diagnosed with this awful virus and sadly numerous folks around the world have died from it. Receiving messages, seeing familiar faces on my silver screen, receiving cards from my sister regularly by post, chatting on the phone, sharing news or a problem or five. I realise how lucky I am to know I am loved and cared for. Next time you pick up your phone to look up your social media pages or online shop, why don’t you give your family or friend a text or better still a phone call. It is so lovely to hear a friendly voice, share a chat; find out whats been going on in YOUR family/friend’s life. If you are going to do something nice today and think of others; do a good turn, please don’t say you don’t have time, life is good and far too short. Share something nice that happened today with someone. Please Pick up the phone – Its good to talk