I don't know how many of you have dealt with having carers come into your home. This is my second time with that as I had carers for Mum and Dad when they came to stay a week and stayed 4 months for both of them and 2 1/2 years after that for Mum. So I had a shower nurse twice a week for Dad and some help when he needed transporting to radiotherapy or had other specialists treatment for his cancer. And when he died I had a four hour minder once a week for Mum. Without that and the respite she got I would have gone purely out of my mind. Looking after an elderly parent particularly one suffering from Alzheimers, as well as a husband with fairly severe stroke deficits is far too much for one person to do so a carer and some respite was really needed.

In 1999 when Ray had his major strokes and stayed 4 1/2 months in hospital he had just got home when I got a phone call from Dad saying: "You had better do something about your mother because if this continues I am going to "top" myself." So I took them to live with me for a week, then sent them home. Dad broke his arm so I brought them back to live with me and apart from periods of respite here they stayed. I don't regret that, looking back I managed, hour to hour, day to day to keep them all clean, well fed and reasonably happy. I particularly don't regret having my Dad here for the last four months of his life. That time was really precious to me. I think it was to him too. Mum was no longer his problem, she was mine. So he could relax and just contend with his illness.

Of course it was very hard work looking after three people with diverse illnesses, disabilities and needs. Dad slept out the back so I could hear him from the back bedroom which I shared with Ray. I got up a lot through the night as he lost his covers etc. I think a lot of the time he just panicked a bit and needed reassuring. Mum slept in the front room in theory but was up and down all night as she still is eight years later. She has the kind of Alzheimers which includes wandering and night terrors. She is "safe" in her dementia lodge now but then she was likely to do all kinds of things thinking she was helping me by cooking etc so I slept with one ear open at all times. But with the three of them I just did the best I could as every caregiver does. I would not recommend anyone looked after more than one person at a time. It is too big a load and you just can't give them all the attention they need as individuals.

After Dad died Mum went into a mental frenzy and became very aggressive, distressed and difficult to care for. She never understood that Dad had died. She always thought of him as being "home" so would escape from me and walk home, six or eight times a day. It was only ten minutes walk away and on the same road so I let her go and retrieved her. In those days there was very little traffic on our road and she was "safe" to do so. Later I had to keep her here and that was much harder for me to do. So she went to Daycare and other respite places three days a week , then five and then into full-time care. It was a very hard decision to make so my heart goes out to all who have to make that decision on behalf of a loved one. There is no easy way to do it. It is simply a matter of deciding that the full-time care option is better than the care ONE person can give them. We are not able to stay awake day and night to care for someone so when it is obvious that more care is needed than is available then full-time care is the logical choice.

When Mum went into full-time care in September 2001 I still had Ray to look after. Although he had his fourth stroke in May 2001 he seemed back to where he had been prior to that stroke within six months. He was much easier to care for then particularly as he could still walk reasonably well and for a short distance. Which is why we were able to do the twice yearly coach tours. He still had common sense, he could still hold a conversation. He was still interested in the running of the household and was still reasonably active. He had the ability to do things like make the beds, wash up, help with the tidying and cleaning. We were able to go on coach tours and driving holidays with me driving. We had one attempt at camping, but my failure to put up the tent properly combined with wet weather made that our last attempt. When at home I was still able to go out for walks in the afternoon when he was in bed. There was a lot more free time in our days as we were sharing a lot of the chores. And life was pretty good there for a while. We were much like other early retirees, able to do charity work in a limited way and join fully in activities with friends and family.

But the 2005 stroke, which seemed to leave Ray with few extra deficits was also the start of his vascular dementia so his physical and mental decline became more apparent. I could no longer go off and do things by myself, and he no longer seemed as motivated to exercise, to help around the house or to show an interest in what was happening around us. It is hard to explain how dementia limits the activities of the sufferer so severely but it does. In a way it is like a fog coming down over a sunny landscape, the fog lifts from time to time but the feeling that life is good has gone. I struggle to make each day seem worthwhile. Sometimes we have really good days. And sometimes we just get through the day.

So now Ray has have a shower nurse on Tuesday for an hour, Thursday for an hour and Friday for an hour followed by two hours respite. Ray also goes to Daycare on Mondays, 9.30am - 2.30pm. On the Tuesdays and Thursdays while the shower nurse is here I go for a walk. I have 20 minute, 30 minute and 45 minute walks I do. If the shower nurse is running late or needs extra help (a new nurse coming in has to be introduced to the shower room, where the towels are kept, Ray's dressing routine etc) I just do the short walks. Today I did the longer one which includes a fairly steep hill. That is when I feel my age. I am sure it does me good, keeps me fitter and healthier but boy! it also zaps my energy too some days.

On Tuesdays the shower nurse is here from 8.15am till 9.15am. That is pretty early for a guy like Ray who would really rather sleep in. I like him to be up, dressed and have had breakfast and his meds etc before the shower nurse comes so it is an early start to get all that to happen. I start the day by waking him with the greeting: "Wake up Ray, it is Early Jeff Tuesday". Jeff used to be our shower nurse, sometimes still is but on Tuesdays usually isn't. But I can't change the name each week so "Early Jeff Tuesday" is still the Tuesday morning greeting. Thank goodness for Wednesday and Saturday which are often our sleep in days. Then Ray can leave getting up till after 8am. Later than that and there are other unpleasant consequences. Let's not go there!

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