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Friday, 23 August 2013

The Reality of Being a Carer

During the past few weeks I've had contact with a number of people who have found themselves in a similar position to me. Most would say that they didn't set out to be a full time carer as a life-style choice - they simply 'evolved' into the role as illness and disability gradually took hold of their loved one. That was certainly my experience initially, although, for us, my role did become rather more intense quite abruptly when Suzie was so poorly last December.
Many people have made some very complimentary comments about the way I care for Suzie, and have said some very kind things, which I really appreciate.... But I don't actually feel like I'm doing anything at all remarkable or special. It just feels 'normal'. As Suzie gradually became less able around the house it just seemed natural for me to take over the tasks that she couldn't do. Likewise, as she became less able to do other things for herself, and eventually became unable to tend to her own personal care, it was just a natural progression for me to help her with these things and do things for her.
It reminds me a lot of when my children were small. When you have a child you take care of them. You wash them and dress them, you comb their hair and put their shoes on, you cook their meals and help them with various tasks that they can't do on their own. When they're ill you clean up after them and comfort them. You sit by their bedside, maybe all night if necessary, if they're unwell or afraid. You make sacrifices, you don't get much time for yourself and you're always on the go. But no-one thinks you're amazing for doing it.... it's just what you do because you're a mother and you love your child. Caring for a loved one like Suzie who is seriously ill and disabled isn't really that different. I'm not amazing or special.... It's just what I do because I love her. I can't imagine responding in any other way to her increasing needs.
A dear friend of ours recently spoke to us about her experience of caring for her husband when he was terminally ill. Like me, she was often told she should go out and have a break. She looked deep into my eyes and said, "But I didn't want to go out and be away from him. I just wanted to be with him. I just wanted to take care of him." It was so helpful for me to hear someone else say exactly what I feel. 
I admit, caring for someone 24/7 is hard work. I won't pretend that I don't get stressed, depressed and exhausted a lot of the time. I won't pretend that there aren't mornings when I would love to just pull the duvet over me and go back to sleep. There are times when I cry tears of sheer exhaustion, frustration, fear and grief as I watch Suzie suffer, and as, together, we see our life slowly and relentlessly being destroyed. But if I can do anything at all to make this painful journey any easier for Suzie then it is my heart's deepest desire to do so. Suzie has given so much of herself and her life to me and my family. Now it's my turn to give something back. 
Does that make me special?? No, I don't think so. I think it just shows how very special Suzie really is, and I thank God for her every day.

Monday, 19 August 2013

Our Holiday!

We've been on holiday!! (Pause for effect......)
Anyone who knows me will know that this is NOT a phrase one would associate with me! I don't 'do' holidays.... in fact, sleeping anywhere other than my own home is way out of my comfort zone, and leaving the house empty overnight is something I find very hard to cope with.
But this was different. We were staying with some very dear friends who are experienced in catering for people with the sort of extra needs that Suzie has, who are extremely understanding about my own anxiety issues, and who were eager to give us as much TLC as anyone could wish for. An added benefit was that their Hotel is only just down the road!!
Leaving the house was immensely difficult and I spent a long time checking and re-checking doors, windows, electrical sockets, the cooker etc. (taking photos of them so that I could check them again while we were away if I started to panic.) Suzie watched and constantly confirmed things were secure and switched off.
When we arrived at the Hotel I was a bit nervous of how I would cope with Suzie's personal care in unfamiliar surroundings, and rather concerned that everything would be more difficult, but it soon became clear that things would be made as easy as possible for us. We were made to feel so welcome and 'cared for' that I was soon put at my ease, and, before long, we were sitting in our room and admiring the stunning views, with a glass of wine or two, before having a most beautiful evening meal brought up to us.
The next day we spent a restful morning in our room and then wandered around the wonderfully creative and colourful gardens, which were easily accessed with a wheelchair. The next couple of days were equally restful and we enjoyed a couple of visits from friends who lived nearby. The wonderful team at the hotel took very good care of us, and nothing was too much trouble for any of them. The food was consistently excellent and we were aware that extra care had been taken to cater for our individual preferences and for Suzie's difficulties with eating certain types of foods. We were surrounded by their love, upheld by their prayers, and overwhelmed by the way God's peace could be felt so deeply. The experience of those few days has left us both feeling rested and recharged.
We have a busy few weeks ahead, with various medical tests required to try to ascertain the cause of Suzie's latest unexpected blood results, a catch up with the Hospice therapist and the Speech therapist and, not least, the imminent major adaptation to our bathroom which is being carried out at the request of the OT to provide a wet room with a wheelchair accessible shower. We will be holding on to the sense of peace we felt during our little holiday and drawing strength from that time of rest and refreshment. Thank you to all those wonderful people who gave so much of themselves in order to give us a special sense of God's love and care. (You know who you are!!)
Here are a few photos to share some of our blessing with you all.

The View from our Room......
....And from the other window!

Zooming in on the Estuary

Suzie and me Enjoying the Beautiful Gardens
Suzie Playing Scrabble on her iPad


Friday, 9 August 2013

And so it goes on....

Just a quick update on our appointment with the Oncologist today. We went to the Hospital fully expecting to be told that Suzie's latest blood test results were fine and that the CA-125 level (which can indicate the presence of cancer cells) was back to normal. So it came as a huge blow to be told that the level had, in fact, continued to rise significantly and that the Oncologist was both concerned and rather puzzled by this unexpected increase, particularly in view of the very encouraging result of Suzie's previous CT Scan. We were told that this situation will have to be monitored carefully and will need further investigation.
There could be an innocent explanation for this continuing increase in the CA-125 Level and we do hope and pray that it isn't an indication that the cancer has returned, but, obviously, that thought is never far from our minds.
This was all very discouraging and Suzie was particularly distressed and upset. Having joyfully thought that we were finally reaching a positive conclusion to the cancer treatment, at least for the time being, we now find that the situation is more uncertain than ever and that the coming weeks will be filled, yet again, with ongoing blood tests, CT Scans, x-rays etc. 
Please pray for Suzie as she tries to cope with this latest setback. In our hearts we are certain beyond doubt that God is in control and that His plan is for our ultimate good. We hold fast to His faithfulness.
Jeremiah 29 v.11 promises that "I know the plans that I have for you, declares the Lord. They are plans for peace and not disaster, plans to give you a future filled with hope."
That is the promise that will lead us through this next stage in our journey.

Wednesday, 7 August 2013

Caring for the Carers

First of all, for those of you who have been concerned about Suzie after my recent posts, I'm pleased to report that her 'additional' symptoms seem to have abated. She's now right back to 'normal' (other MSA sufferers will know what that means!!) and we have put this latest episode down to a reaction to one of her medications which she has now stopped taking. She had a blood test yesterday and we have to see the Oncologist at the Hospital on Thursday to discuss the results. We are hoping and praying that the CA-125 marker will be back to normal, which will indicate that the cancer is under control.

We've been out and about again a few times recently, which has been good, especially for Suzie. She finds it so hard to cope with the boredom that comes with being unable to do all of the hobbies she used to do. She's just not a 'sitting around' sort of person!

Meanwhile, in my 'spare time' (!!) I've been setting up a new support web page where Caregivers and their loved ones can find encouragement, friendship and hope. We all need to know we're not alone. If you're a Facebook user please 'Like' and share this valuable means of support which focusses on upholding those who are caring for loved ones with any kind of on-going illness:

Sharing your life with someone who has a progressively debilitating terminal illness can be a very lonely experience. You can only watch helplessly as your former life gradually disintegrates and gets eroded away by the relentless caring activities and the ever increasing challenges that the illness presents every minute of every day. Caring for Suzie is something I do gladly and willingly out of devotion and love for her, and I don't begrudge her a single moment of it, but sometimes just being able to say 'Hi' to someone else who may be facing similar challenges can make all the difference. Those of you who know me well will know that I find it very difficult to go out and socialise, but that doesn't mean that I don't feel the sense of isolation. Having people online with whom I can exchange messages and share mutual experiences is such a great help both to me and to them. The most wonderful and heartwarming feeling of all is when someone tells me that something I said helped them and made all the difference to their day. That really is a most uplifting feeling.

I may never get to meet most of these friends face to face, but I promise one thing to you all.... I will pray for anyone who interacts with my support page, my blog or any other of the places where we 'meet'. God knows the needs of each and every one of us, and I will make it my commitment to bring your names before Him in my own private prayers. May He bless you.

Jesus said "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest." (Matthew 11v.28)