swilkinson

Yep, a good vent does me good as a caregiver too. All we are really saying is that this is not the life we would have chosen and that hurts. I am sorry you are in pain and suffer from depression. I hope some solution can be found to that. The selfishness of your children (and mine) their lack of loyalty and love seems to be a common theme here. We were raised to honour our parents and that at the end of their life we would look after them, guess we didn't teach our kids the same. Sue.

Annie, I am glad you are starting outpatient rehab I know it did Ray the world of good especially after the strokes in 1999. It also reminded him that he was not the ONLY ONE who had had a stroke and broke the "poor me" attitude. When he saw someone with less movement than himself he would say :"I guess I was lucky." Having the foresight to get railings on the stairs was certainly a blessing. We waited 18 months for ours to be done. The chap who we had contracted to had a heart attack himself! Keep up the blogging it is good to be able to read about your life and progress. Sue.

I am feeling a bit better. My nose is bothering me less and the cough is not getting any worse. Thank goodness I am also finally getting some energy back and feeling better about life. I have been a sad sack for the past week or so,now it is time for me to pull up my socks, get myself together and start planning things like spring cleaning. I sometimes feel as if I am half-awake, as if I am not able to give life my full attention. I know that is common in survivors but I think it is common in caregivers too. It might be because thinking for two people gives you almost a split personality, it keeps your mind very busy, far busier than when you worked or raised kids or thought you lived a busy life. Today I was doing what I often do, looking for my keys and I came across a pile of unopened mail. I know Trev often brings our mail in and it sits on the table and I clear it off and put it in a heap. This pile contained the usual information letters from insurance companies, banks etc and two unpaid and almost overdue accounts and a 60th birthday invitation from an old friend. I knew it was coming as she rang me to tell me she was inviting Ray and I to her birthday party, the venue is disabled friendly and she hoped we would be able to come. So I will make the effort and we will go. Tonight I received a phone call from another long term friend. As she talked I realised she didn’t know much about our last year or so, so it must have been a while since we last spoke. She is in a good place in her life as her children and grandchildren are all doing well. As I talked to her I realised how wide the gap was between us now. My friend is a person of goodwill and was once a very good friend, we had children the same age, came from the same kind of background. Our husbands were once really good mates. But somehow our lives are now so different that we have very little in common. I think in the end she made an excuse to ring off. I didn’t really get a chance to say good-bye but that was what it felt like, as if I was saying goodbye. Mum was good when I saw her yesterday, she is not as alert now as a few months ago, sleeps more, seems a little frailer. It is hard to chart the development of her Alzheimers as she seems to change very little. But I realise that changes have taken place, like she is now having energy foods instead of cake for morning tea, to “build her up”. I can see she has lost a little more weight. She was making a little whimpering noise as if she was unhappy. I asked the staff if she was okay and they said yes, no infections, not in pain as far as they know. As soon as the warmer weather comes I will take her outside in the wheelchair, maybe sunshine on her skin will make her feel better. I feel like a mother with a small child, worried about her well being and wishing I could understand her in her strange wordless world. Caregiver chat this morning was good. It had some sad elements in it as chat sometimes does but it was still the usual supportive framework for discussion. I enjoy the chat as I think the other participants do. I have been doing chat for close on four years now and never tire of it. I do miss people when they no longer join us but also enjoy meeting newbies and making them into friends. This afternoon Ray and I went to Kid’s Club. It was cold and blustery so I was out in the yard with the five boys who always love to play outside. They come straight from school so enjoy the 30 minutes of wild play. I let them go without comment unless I think what they are doing will result in injury or death. They build the cubby house out of sheets, play ball games, generally play very noisily, then it is in for afternoon tea and the rest of the program. Twelve kids today and a good but robust time had by all. The tiles are finally set, a bit more painting, doors and window frames and the toilet is done. We still need the rest of the interior painted but there is a lot to sort and pack up for that to be done so we will have a break for a while so I can clean up present mess and attempt a spring clean. It will all be done eventually.

Tony it is hard for me to reply without offering advice. Point taken though. So just to wish you well as you sort things out for yourself. (((Hugs))) from Sue.

Wow George, what a great thing to happen. It is true that things do change sometimes many years post stroke. I am sure you are going to benefit from that extra range of motion in all sorts of situations. (((Hugs))) to Lesley too. Sue.

Ruth, what a fantastic trip, Ray and I did bus trips for a while, 2002 - 2006, had some real adventures. William is doing so well. He really responds well to the special treats you give him which is good as you can use them as incentives. I am sure there is a lot to see in Texas and you will enjoy your trips together. Take photos to build on the memories. Sue.

The painters are still here, it is still raining every second day and our life has sped up again. That might have been the reason for an incident last night. It was well after midnight when someone shouting woke me up. It was Ray. He was shouting: “ Are you there Les?” when I answered “I’m here.” He said: “I don’t know where the toilet is in this place.” For a carer this is really scary. Les, his older brother and Ray shared a room in their mid-teens. It was a back verandah and their younger brother was up the other end. So I guess shouting to each other was the normal method of communication. Using someone else’s name can mean all kinds of things, like he has had another stroke, he has had a memory lapse, he is confused etc. The thought that he might have had a stroke which had robbed him of current memories was my first thought. That would have been really scary. Can you imagine living with someone who no longer remembers the period of time you have been in their lives, who thinks you are his sister or his mother or his aunt? One of my acquaintances had that happen to her. One day her husband woke up and had no memory of her at all. He wanted to know what right she had to be in his house etc. She.thought really quickly and said: “I’m your housekeeper.” She moved her possessions to the spare room and lived there quite happily. He accepted that she showered him, cooked his meals etc. The doctors thought he had had some kind of seizure and that had speeded up the dementia. All you can do under those circumstances is accommodate the delusion and go on with life. Happily once the lights were on and Ray could see the familiar surroundings and the same old wife as usual in her night attire he calmly accepted the urinal which was in it’s usual place. He didn’t say anything further and went straight back to sleep. I mentioned it this morning and he said he thought he was having a dream. I think so too but worry lest this is a sign of things to come. I might add I did not go back to sleep but came out onto the computer for a while until my mind stopped worrying about what had happened. It is so hard sometimes to contemplate what may or may not be in our future. I belong to a couple of dementia sites and some of the posts talk about the loss of recognition as it is so painful for the caregiver to no longer be know for who he or she is. Not something I want in my future with Ray at all. I didn’t do anything much today; I left Ray on the front verandah with his word puzzles and worked on repotting my pot plants. By the time the painters got here just after lunch he was heading for bed. They have promised me that tomorrow they will start packing up and returning the verandahs, front and back, back to the way they were – weather permitting of course. The rest of the house will be painted in late September, one room at a time. That way hopefully we can accommodate Ray and let him have some of his normal routine. And hopefully by then the weather will be warmer and paint will dry faster.

Fred, remember the days before A/C when we hung wet sheets over the windows and doors and cooled the house that way? Here we also used to leave water in the bath and pop the kids in there to keep them cool and moist. Mum topped it up with cold water from the refrigerator and gave us kids ice blocks to keep us cool. We all played under the hose and flocked to any kind of waterhole. Of course we looked after the little ones who couldn't swim, made sure they played in the shallows. Looking in on the neighbours and old folk is a great idea and maybe taking them a nice cold fruit drink, because some of them won't maybe think of that. Wearing loose clothing is good in the heat and a nice wide brimmed hat too. I've seen people with bad sunburn on their feet as they remember to cover their faces in sun lotion but not their feet if they have sandals on. Just reading your post took me back to my childhood in a town where heat waves and weeks above 100 degrees were the normal summer weather. And we survived and thrived on it. Sue.

Ray and I have been away the past four days and it rained and it rained and it rained some more. Cold, wet, windy and gloomy pretty well describes the weather we have been having and I was so grateful not to be home and having to go out in it. I have been feeling guilty as after going to Camp Breakaway twice last year we have been four times and it is only the end of July. It seems they had a quite a large grant of money earmarked for disabled children and people with dementia and their carers so they put on extra camps. As it is winter people have been turning down the invitation, most preferring to stay in their own homes. Some of their regulars are in respite or unhappily now in full time care which is inevitable as their disease progresses so we got an extra invitation. I must say I am more than happy to go any time we are invited. It is such a good break away. For me it means social and physical support for Ray and for me three days when I don’t have to shower Ray, cook meals or clean up after him. It is a real bonus and does make a difference to our lives. I wouldn’t say I come home revitalized as I still have a to do a lot of hands-on care but I am refreshed by the kindness shown to us. I am suddenly aware again of the healing power of kindness. I saw it in the melting of the two new couples who came full of suspicion and a kind of hopelessness and went off today faces wreathed in smiles and with a new spring in their step. As we know coming on here there is some comfort and strength in knowing you are not alone and that others share in your struggle with a debilitating disease. And the older you get the less energy you have to fight with. And love their partner as they might the caregivers know they will not be able to cope forever and a parting of the ways is close in some cases. So if you missed me in chat on Tuesday or posting on the boards that was where I was, enjoying the entertainment like watching the marching band and listening to the skirl of bagpipes on Wednesday. Maybe you can picture me walking up and down to our cabin jumping puddles as I went, or walking in the rain and watching the mama plover defend her two little ones from the ducks and galahs who were enjoying the worms driven to the surface of the large expanse of lawn by the steady soak of rain. Just finding peaceful occupations to fill in four rainy days. And on Tuesday we shared a special celebration with an older couple as we celebrated our 42nd wedding anniversary and they celebrated their 53rd wedding anniversary. We had a grand afternoon tea party with a caterer’s sized caramel cheesecake and a black forest cake to be cut up among the 21 campers and staff. It is another special feature of the camp that we can celebrate the good times of life together. Some people we have encountered at camps we have known for three years now, for others it may be their first but we are all “kin”. I had a look at the History Books and saw the newspaper clippings they have accumulated since the opening in 1987, so many people helped, some pictures of disabled kids reoccurring year by year as they enjoyed camps and the fellowship of staff and patrons. How many wonderful people have given their time as volunteers to make all this possible? Craft ladies who make and sell their goods from the Craft Cottage, the auxiliary members, the Rotarians who are the main fund-raisers and form parties of handymen to do improvement to the grounds. Then there are voluntary carers and paid staff who train them and extend their hours way past their “knock off” time. So many wonderful, wonderful people who give of their time and effort make it all possible. I still have my cold, Ray still has the leg pains and the shakiness, but somehow we are “better”, renewed and strengthened by our sojourn in one of life’s most pleasant places.

Thank you for these articles. I have sent one on to a friend of mine who has an autistic grandson. Of course in Australia we are way west of Texas (lol) but we have the same problems and may be able to set up similar programs I hope. Miss Tootie is still one special girl. Sue.

This morning when I left to spend three hours away from Ray who is really my job now, I wanted to find somewhere to sit and think. I finished up opposite the beach at the Surf Club where we have our Lions Club meetings, having coffee on their terrace in the sun overlooking the ocean. It was a nice view with the dark sea reflecting the rain clouds that are still a feature of our winter. There were couples with dogs that looked like stick figures in the distance walking along the beach and down to the rocky outcrop. A funny thing happened while I was there. I had an egg sandwich with my coffee and was sitting at an outside table holding a quarter between my fingers when a magpie (about the size of a seagull) flew down and snatched it out of my hand. I nearly screamed with fright, then took a minute to realise I was not hurt, just very surprised. What a cheeky bird! I guess he is finding food hard to find and there it was in my hand…lol. We have a couple of handymen doing some painting on our front verandah and now the shower room and bathroom ceilings which have both needed painting for a while now. It is strange to have people talking around the house, overhead on the roof etc. I know it will all look much brighter and better when it is finished but at the moment everything is in piles around the place and chaos reigns and things are all so messy with all the toys and furniture piled up out of the rain. It looks such a mess and I am impatient for it to be done and the whole area cleaned up. While I was at the surf club I noticed they have some wise sayings that apply to what they train people to do there. One that struck me as very true read: “It takes one person to make a decision but a whole team to carry it out.” I thought how true that was of this moment in my life. Here today there was me, the two handymen and the carer to make life happen this morning. Nothing we do is ever achieved alone. Everything we have in our possession was made with the help of teams of other people, our food, our furniture, the computer we are sitting in front of, all were the result of a team of people operating together. “No man is an island unto himself” Shakespeare said and it is so true. I’m still coughing and using over-the-counter preparations in the hope that my body will strengthen and throw off this virus as nothing seems to work against it. The pharmacist made some recommendations this morning so I am taking a couple of more modern versions of the cold and flu fighters to see if that will help. I hope so as I am still pretty miserable after it gets colder of an evening and coughing away all night. Ray seems to have had a few odd days when he has had falls etc, followed by a good day here and there. I don’t know what makes the difference. Our mentor at Dementia support says that dementia is cyclic and has good and bad periods. I’d like to know how you figure out what is going on and could make some appropriate changes. I will have to do Asha’s trick and “go with the flow”. This week has been a good week in a way as Trev cooked us two evening meals so I was free of cooking for a couple of days and we have had a couple of phone calls from people we have not heard from for a while. It is heartening when old friends reach out to us across the miles. I sometimes think everyone has forgotten about us but of course they are just busy with their own lives, as we are with ours. We had Lukie after school yesterday as Edie’s car broke down and Trev galloped off on his white charger (well white car) to save her and bring her safely home. Lukie beat me at a series of Carnival Games on the Wii so was very happy to be here. Tori is coming on Sunday to stay overnight as she has a pupil free day so is off school on Monday and her Mum is working so the little boys will go off to Daycare and Tori will be with Granma and Pa for the day. She will light up our lives for a while. So there has not been much housework done this week, and very little to show for what we have all done. Of course we have been working toward improvement but we are at that difficult half-way stage. Next week should resolve that and we will at last see the benefit of all the hard work.

Debbie, it took me eight years to start to clean out Ray's workshop (he was a carpenter) ten years to have his old boat that had rotted in the weather, dragged away. I was somehow going to "find" that handyman of mine again. I admit there are still many traces of his worklife here although I know he is not EVER going back to it. It is hard to let go of the old life. You are to be commended for all you try to do. If everything is not as good as you would like it to be it is the same for us all. Ideally the stroke survivor would get all the help they need, they don't. We just all do our best with what we have. Sue.

Hi Tammy, make the most of the "normal" days,those summer days, particularly those floating in the pool days! Here in Australia, it is cold and damp and some days windy so I am envious of those of you in summer. Glad you are here in blogworld, it is lovely to read of your progress toward recovery and share your family life. Sue.

Debbie, we are fortunate that we are both low maintenance people, no big wants and very few needs so I manage within our budget. I know that is not the same for everyone. You may be able to find a student who will put Bruce through the exercises for a small fee. Our shower nurses do the exercises with Ray, the fees have gone up but we still manage to pay for that.It means they are here for an hour instead of half an hour but it is worth it to see them doing it together. You do wonder where those chatty periods come from, Ray is mostly silent or will just says a word or two in reply to something I've said but does get chatty occasionally and you are right...it is like old times and so good. Sue.

“Nothing can be done”…. not the words a caregiver wants to hear but that is what the neurologist said as he looked at Ray's MRI and the bone scan results yesterday. He also said that although Ray has not had more strokes the area of damage is enlarging so he has more deficits. I asked why and he said: “We don’t know.” I asked why he has had a bleed as well as the blockages; again he admitted he didn’t know. He doesn't seem to think it is the falls causing the pains so much as changes to his posture, movement etc. He is passing on a list of possible painkillers to the GP so that he can try them one at a time on Ray. The neurologist doesn’t say much in front of Ray, he doesn’t want to discourage him. I will get a lot more from having our doctor read the neurologist’s letter out loud which he usually does. Ray usually stares around the room at the posters on the wall of the doctor’s rooms so I don’t know whether he takes it all in or not. Ray was walking so badly yesterday I wheelchaired him into the neurologist’s office, usually he is able to walk in. But just sitting in the car was painful for him yesterday. I would be more successful at finding a solution for the pain if it was with him all the time but like so many things the pain seems to come and go which makes me think it may be linked to the dementia…but no-one sees to have an answer to that either. I went to the doctor myself yesterday morning as I have bronchitis again and am in some pain. I had viral pneumonia in 1991 and get a bad case of bronchitis every couple of years. I am run-down due to lack of sleep. The doctor had a bit of a joke. He said: "Sit there while I read your file." He then turned over a piece of blank paper and said: "Ah yes." I was last there as a patient in July 2008, same reason. Of course I also see the doctor with Ray about once a fortnight so he knows what is happening to us both. When the three hour respite carer came this morning I didn't go out, I sat in the sun with a blanket over my knees and napped. This afternoon I feel a bit better, probably the antibiotics kicking in so have done some small jobs around the house. I will take it easy tomorrow and hope that the bronchitis gradually goes. As usual as a caregiver when something goes wrong I just have to carry on as best I can. No one is here to look after me so I best get on with it. I think I am mourning the past again as last night I had a nightmare where someone was holding me down and I was trying to get away saying: “I have to go, my daughter is waiting for me at Cairns Airport.” I know my daughter now lives in Shell Harbour and there are no more lovely winter holidays at Cairns – I just have to tell my subconscious! I love my family and I wish we saw more of them. It would be nice to sit down with for a meal and have a chat over coffee. Why are all our families too busy to visit? Maybe it is “out of sight, out of mind”. Our two man handyman team came by yesterday to look at the small job of replacing some boards around the side of the house. It is time consuming and we don’t yet know what the cost will be but I’m trusting that it will not be more than we can afford. I have a list of little jobs that need doing to keep the place in a saleable condition so these will be two off my list. They came back today and started the job so maybe by Wednesday next week we will have the boards replaced on the end of the house and the verandah ceiling and railing repainted. I am hoping to start putting up the surrounds for the vegetable garden soon. I have the materials, all but the posts so have to find somewhere that stocks small posts. I don’t get around to hardware stores much, I guess it is more of a man thing so I will force myself to get the measurements and go out and find what I need. It would be nice to have a veggie patch again. I used to grow vegetables when I was a young woman so do know the basics. And we all know how good something that goes from the garden to the plate is. I will still have the herbs and all my flowering pots to look after of course. Only about six more weeks of cold weather to go, we are promised another fine day tomorrow so will spend some more time out in the sun and hope that drives the bronchitis germs out of my system. It seems so hard to keep alert when I am on antibiotics; I have a really foggy feeling. Luckily I am only on them for five days so hopefully that is enough to chase the bronchitis away and for me to be healthy again.

Hi Jan, glad to hear you have Beau as your trainee service dog, I am sure in years to come you will be a great team. I read that you are going through some trying times with the death of friends, we have been too. It is hard to get over the loss of really good friends, they are irreplaceable and it leaves a gap in our lives. . Keep on giving us that lovely glimpse into your world and sharing your life with us. (((Hugs))) from Sue.

Just had a couple of nights with our grand daughter here, it is the winter break and she had two weeks off school. All three of us went to the shopping centre yesterday and spent some time (and some money) and today while Ray was at Daycare she and I went down to The Entrance to the movies and saw the latest Shrek movie. I love her company, she is bright and fresh and really easy to please. A very satisfactory two days. I am still coming to terms too with the death of my old friend Claude. It is hard to contemplate that people who have been a fixture in your life for many years will suddenly not be there. I know he was 92 and sick most of this year but it is still a hole in my life. On Friday I felt as if I was wandering in circles. I did see Mum and then went to visit another old friend in hospital. I know - my life is so fun! Mum has been well the past couple of weeks, not as sleepy as she was a while back and so I have no immediate worries about her health. I know she is not here for much longer but her demise does not seem imminent if you know what I mean. She is still in the centre of my life, I visit her Tuesdays and Thursdays and last week I actually visited her on Friday as well as the little bus that takes them out for the morning had broken down. Looking after her and visiting her has been so much a part of my life in Ray’s post-stroke years, hard to imagine life without her in it. Monday is usually our quietest day of the week, I do housework and Ray reads through the morning and sleeps all afternoon. But yesterday we went to the shopping centre in the morning and then Tori and I played on the Wii doing various forms of Wii Sports most of the afternoon. She challenged me to the 10 minute Jog and I must say that I did beat her by a few yards but it took me every ounce of breath to do it. I used to do a lot of walking and as it is hilly here I was pretty fit but the last two years I have stayed closer to home and lost a lot of my fitness so I will have to concentrate on getting it back now. This morning while the shower nurse was here Tori and I went to a local beach and did some walking, something else I have not done for a while. I found that exhilarating, I love to be on the beach and although the steps (lots of them and fairly steep) were a bit of a challenge it was a great idea. She always has loved to pick up shells so took another couple of handfuls of those home with her. There were a lot of different birds flying around the escarpment as we mounted the steps too so that was good to watch. We do live in a lovely part of the world here and although I complain about our winter being long and dreary it is not really cold, the lowest it gets is just above frost point so it is nothing compared with what a lot of people go through. I think it is those spells of grey sky days with no sunshine that make it seems so miserable. That is when I get those mid-winter blues. At least the past couple of days the sun poked through the clouds a few times, sunny periods, just as the forecasters said. Tonight I spent nearly two hours talking to Ray’s older brother’s wife, they live in Queensland about 50 miles north of Brisbane. She works, her husband had an accident that left him a semi-invalid in the late 80’s so he hasn’t worked since then. She has some of the frustrations of a caregiver who sees a “normal” husband sitting around doing nothing while she works. We both agree that he isn’t normal, lots of defects from that major accident probably including brain damage, but he “appears normal” so is expected to act it etc. No answers to that problem as we all know. She says I am one of the few people who at least try to understand. Now where have I heard that before…lol. And so days go by, some good, some bad. As the song says: “tra la la la life goes on”. I am still trying to solve the reason for Ray’s pain that is so strong some days and yet not around at all others. Maybe we will get some more answers when we see the neurologist on Thursday? In the meantime I just have to be patient…I’ve heard that somewhere too.

Wow Debbie, Mike sounds like one in a million for sure. I am glad Bruce is accepted at work. I would be like you, popping in and then out again. Do that for a while but if they get into a routine with his toileting that would enable you to have free time for longer. Your neurologist is wrong to tell you there will be no more improvement, he should instead have told you improvement will slow down and Bruce will have to knock down some barriers to keep going. Sadly Ray always stopped exercising as soon as the professional physios stopped coming. But having said that he still tried to do what I needed him to do and still does. Ray is a realist and knows that when he stops walking I will not be able to go on caring for him at home. As usual there are good and bad days and we cope with both. (((Hugs))) from Sue.

Ruth, what you go through to get William to exercise I used to go through to get Ray to eat healthy and keep his diabetes under control. 20 years down the track I am still doing it but with less volume. Ray is alive because he has me to look after him, all his specialists say so - they have seen the MRIs and know what could have happened had I given up on him. Try to find a way to motivate him without destroying your own peace of mind. You can get caregiver burnout while aspiring to inspire if you go at it too hard. Keep on swimming, but 4.30am? Not for me ... shudder ...lol. Sue.

I want a new day in the week. It will be called Unday and I’m putting it between Sunday and Monday. Unday will be a Caregivers Breakaway Day. When the Caregiver wakes up in the morning there will be no one else there. They will not have work to do or any commitments. It will be a people free day. It will always have the sun shining all year round, be a pleasant temperature and just the ideal day to stretch out and relax. Okay, yesterday I had just woken up and Ray had had a fall, so called Trev to pick him up, sat him down for a while and then showered him and went on with the day. This morning he had turned the alarm off and it was 20 past seven when I woke up and he had spilt the urinal in his bed. Yep, clean up, change the bed, put some laundry on, shower Ray and go on with the day. Tomorrow? Who knows? No two days the same. I am over looking after someone every hour of every day. I know I get some breaks but it is not enough. This is years and years and years of looking after someone else, not having a life of my own! Under the British system a caregiver can get a break of a week every two months. At least that is regular and booking ahead you know how many weeks it is before you can sleep in, get a haircut, go out for coffee etc. Here we can get up to 60 days a year at a subsidized price in respite rooms in designated nursing homes or respite hostels with nursing care. So far I have taken two or three two week breaks a year and that has been enough. I am not sure now whether a break once a month would be enough. But maybe a weekend off from time to time in between breaks would help. I have just sent out an email saying we had a good day yesterday and to a certain extent that is true, we did have a pleasant BBQ lunch with our son Trev, Edie and Lukie and then Trev got out the Wii and after Edie and Lukie had played Carnival Games Trev Lukie and Ray had a couple of games of bowling and Ray won the second game. Good for him to occasionally have a win, do something well, have some praise, we all need that to happen. So this week we have our old friend Claude’s funeral Wednesday morning, which means I will not be at chat again as I will be on the way to the funeral. I can’t miss this one as we have been friends with this family for over 20 years and for the last four years since he went into the hostel and then the nursing home I have been his main visitor. The family will gather and cry and say how much they’ll miss him and they will but they have not had the week by week contact like I have. They are nice people but prone to “living their own lives” as so many of our friends do. I wonder who they think calls in to say hello and do small errands, and if they think kind neighbours should do the things families are meant to do or if indeed they think about it at all? I will miss him anyway. I know it sounds as if I am always whining about my life, sometimes that is the case. I get unhappy about the unfairness of life, the unequal burdens some of us carry, the lack of appreciation and thanks, the way it is just assumed that we will do it, we will go on doing it, we are happy to do it etc. Work is work, and looking after a person with multiple disabilities is hard work. And sometimes too much work for one person. But the alternative, putting the person you have loved for 42 years into full-time care is not the answer I want. No, not at all, I just want a little more time to myself, some worry-free time off, a weekend away, or a day of pampering. Having said all that – give me an Unday once a week and I will be fine.