swilkinson

Lenny, you're the motivation guru. Sue.

Yes, that you are still you is enough. Sue.

Julie, glad all went well and you had an expereinced person with you and Larry this time. I think that makes a difference. Good luck with doing your own adjustments when the time comes. Sleep deprivation is no good so concentrate on getting the rest you need. Housework and lawnwork will wait. Yes, sit back and smell those last sweet roses, not a bad time to enjoy the last of the summer foods before it is soup and toast again. Sue.

Ruth, sorry it didn't work out for William, I well remember all those cancelled and redated appointments. You do well to maintain your schedule as you do. I hope it all works out for Friday. I love about you that power to be flexible. You manage to sandwich in events like the lunches and dinners, trips out and whatever you can do to make Wiliam's life more interesting and stimulating. You go over and above what a caegiver usually does to make life sociable for William. Sue.

This morning I found it difficult to get out of bed. Not like me as I usually spring up and out, ready for the day. Twelve years of caregiving and always the alarm went off and I was up! Of late I have the alarm on the morning news and just lay back and listen to the headlines for a while. I know that I am stalling but it seems as if this is a part of my life now. I find the nights the hardest to cope with. In the day I am busy, outside in the garden, inside the house tidying, sorting out and trying to get the house to where Trev and family can move in. In the middle of the day I am with Ray, supervising his lunch, reading to him in the courtyard, taking him for a walk in his wheelchair. I talk to the staff and know most of them by name now. I talk to the other women who come in daily as I do and we form an informal support group. I know I look at them and think “if she can, I can” and I am sure they look at me and feel the same. At night, after the evening meal, I watch television for a while, come on the computer, phone one of my old friends, knit, sew and crochet, anything to hold the darkness at bay. But I still sometimes wake up from where I went to sleep in my armchair crying over the fact that I cannot bring Ray home again. I know it in my reasoned daytime mind but at night my mind says: “where is my husband, he should be home here with me”. We have been back here in our own house since 1984 and I seem to have accumulated a lot of memories, well junk really, and as I sit and sort it out it is so hard to throw any of it away. The old school reports, postcards from friends, old magazines with that recipe or article I wanted to keep. I did it with Mum’s house when she moved into care and it took me six weeks. Now I am throwing away so many memories. I know in a way this is a preliminary to moving Trev and family in but somehow it seems more like throwing away the past Ray and I shared. Yep, I am a pack rat for sure. I know I cannot bring Ray home again. So far I have not even taken him out in the car. He cannot stand up and hold his own weight, cannot walk, cannot....so many things. And I know this is our new reality and I have to accept that. At the home they move him with a Stand-Aide and it takes two of them to maneuver him into bed. I keep thinking that if I had the boys with me we could move him between us. I never had this problem with Mum when she went into care as her problems were old age and Alzheimer’s but she could still walk so I just put her in the car and drove her away from the home for a few hours. I cannot do this with Ray. Ruth, I have just read your blog, had a cry and decided to be brave and put down some of what I am thinking in words for everyone to see. It is not a pretty blog, a bit raw and confronting, It makes me uncomfortable just writing it. I am hoping by doing so that I will see it for what it is – my reality. I am often where you are now. I am still not reconciled to the fact that Ray is in a nursing home and I cannot bring him home. I am still getting used to going in there with my "smiley face" on and being bright and breezy with the staff and taking him out into the sunlight etc. I know this is not what I want to do, I want to bring him home, go on with our lives but logistically it cannot be done. I would never be able to afford the extra pairs of hands I would need to bring home a man who needs three people to take him to the bathroom, shower him etc. I hate the reality of all that. I read the other blogs on here and wonder how some of the people like Sarah, and Missy, Steve Mallory’s wife can care for their very disabled loved one in their own home as they do. I think my stumbling block is that Ray is both physically and mentally affected by his stroke. He has no logic and no process thinking, so even if I say: “right foot forward Ray, now I will swing the left foot forward, now you swing the right” he cannot follow that instruction. So he is unable to do anything to help himself or to help me help him. I’m sorry, those of you who are not at this stage yet, to cast these gloomy thoughts in here. Just remember that it is mine and Ray’s story, twelve years on from a couple of major strokes and not everyone’s story. I remember the ending of one of my favorite TV series, which went something like: ”There are xxx millions stories in this city, this has been just one of them”. The next blog will be more cheerful, I promise.

Ruth, I am often where you are now. I am still not recociled to the fact that Ray is in a nursing home and I cannot bring him home. I am still getting used to going in there with my "smiley face" on and being bright and breezy with the staff and taking him out into the sunlight etc. I still wake up from where I fell into an exhausted sleep still crying over the fact that I cannot bring him home again because he cannot stand up and hold his own weight, cannot walk, cannot....so many things. And I know this is our new reality and I have to accept that. Thank you for telling your story, mine is different, but the initial strokes in 1999, for Ray as for Dick came out of a very busy period in our lives and changed the man Ray was into one almost totally dependent. We two are among the fore runners of those who will have to put their care recipient into a SNF or nursing home and just visit and cry and be on their own. It is not easy out in front alone is it? I have been able to go on with some of my activities but life is very hollow now. (((hugs))) from Sue.

He is a great little man Dyan. I am glad he wasn't scared this year and enjoyed his Halloween. Ths is the link to the pic: http://www.strokeboard.net/index.php?app=gallery&module=images&section=viewimage&img=3438 Sue.

Leah, you know you are in my prayers. I have started a thread on the forum calling for prayers for you at this time. May God indeed grant you serenity, peace and courage as you continue your journey alone, without the one you loved so much for so long. (((hugs))) from Sue.

Dave, I used to be a hospital visitor and often surprised people by arriving for a visit when they had just got there. Bad news travels fast and sometimes I would see a friend of the person in the parking lot or on my way in and they would tell me. Whatever happened I always felt it was the Lord's doing. It is good you were well enought to go to Mass as soon as you got home. One kind of normal achieved then and there. Sue.

Fred, a good attitude makes such a difference. Sometimes life socks me one but I think I have a good recovery time and then I get on with life. I too find much inspiration with reading and commenting on the blogs. I like that saying: "You can't not tell your story". I think telling the story and sharing the journey is what keeps me going. Sue.

A very busy few days for you Ruth. Such a lot going on. I would be so frustrated with William calling 911. It would be considered a nuisance call here. And William would be "flagged". You do a mighty job keeping everything going. I don't know how you manage to work with all this going on. (((hugs))) from Sue.

I’ve just had a few days away with friends. The holiday was booked at the beginning of this year and if Ray had been home he would have gone into respite for a week or so in order for me to go. It was a seaside resort with cabins, caravan sites and tent sites about two hours up the coast from here on a beautiful bay. Our club mainly took the cabin option but some brought their own vans. Trevor said all would be well as he would monitor my messages, collect my mail etc. I left several contact numbers and also advised the nursing home staff that my son would pass on a message if they needed me. Seemed like a plan but that was not how it worked out. Apparently Ray had a seizure on Monday, which adds up to one a week for four weeks, and then a "turn" on Wednesday which is when the staff started leaving messages on my answering machine. No calls to my son at all. So today I went in to the nursing home to try and sort it out. The staff nurse said the doctor said the "turn" may have been a slight heart attack and so the doctor wants Ray to have a heart monitor for a 24 hour test. I am not sure he will leave all the wires attached as when he was in hospital he pulled out both the catheter and the canella. I didn't feel up to arguing after a three hour drive so said I would think about it over the weekend and discuss it on Monday. He is not a candidate for a defibrillator or pacemaker so I don't know what the monitoring will achieve apart from confusion and frustration on his part and probably mine if I have to sit by his bed for 24 hours! It was great to get away and not think about the problems I left behind at home, to sleep in, visit with club members in the other cabins, have a BBQ under the stars, walk on the beach and enjoy good company, with not a care in the world. It was hard to come back and find Ray's health and his care is still as much of a problem as when I went away. It was a little daunting being “Sue alone” as with this particular group Ray and I have shared a lot of friendships. They have been very supportive to us over a lot of years. We have spent a few weekends away with them and also been to conventions with some of them and enjoyed their company over a 28 year period. Not as much over the past few years of course as Ray has not been as mobile or able to happily change environments. I shared a cabin with a couple and another woman who was recently widowed. We got along just fine. The majority of members remember Ray back in his best years so that clouds the issue of my putting him into a nursing home. I think they can accept that he is sick but maybe not see how sick. I could see some looking at me across the room and nodding to me rather than coming over and talking to me. It is a hard adjustment to make, I know that. I had some time to think while I was away. My widowed friend and I discussed some of the hazards of being a woman on her own. Of course a lot of the common ones, like doing the things the “man of the house” usually does I have faced up to anyway. There is still more for me to do as I am still the person responsible for Mum and Ray. She acknowledged that and that I still have a lot of decisions to make on Ray’s behalf. Her husband died of cancer so she did nurse him and knows some of what I am going through. I know some of the other club members relate to what I do for Mum as they too have looked after aged parents, both at home and in a care facility. It seems common to find among the caring population people in service clubs, who are practical by nature and fit into that category somehow. The male half of our club members belonged to a service club called Apex, now almost defunct, that helped out in rural communities, their service work included establishing in some small towns community based care facilities and sponsoring help for disabled people so they have giving hearts. Just seems harder for them accept when it is one of their own that needs the care but we are all ageing and will be there ourselves one day. I am glad I had the break, sad it did not work out for Ray, a bit anxious about what I should do for him to ensure his care need are met appropriately. PS Lucas fell off a jousting pillow at his school fete last Sunday and has broken his left forearm. He has it in a fiberglass cast and is okay with that. He has gone away with his Mum and Trev this weekend to some friends in the country. I have my fingers crossed that he will not do anything foolish while he is away!

George, great to see you back blogging again. I hope a new crop of bloggers gets to appreciate your blogs as much as I do! Congratulations to NZ Rugby tam via Lesley for winning. Kudos to them for being wolrld beaters! I'm glad you have found anothr hobby and thank you for "paying back" the helping hand your neighbour gave your parents. WELL DONE! Sue.

Adding my sorrow at hearing this too. It is often the case when one has a disability that the other, under the strain of it all, goes down too. That is why caregivers are warned to take care of themselves. You will find the strength to cope with this and I know show her all the compassion and love she has shown you. (((hugs))) from Sue.

Good for you Fred, it is the perseverence that brings the results. I agree, dancing next! Sue.

Julie, glad you have one appointment out of the way, good luck with all of the others. I know what it is like to try and fit it all in. Take what time you can to be with people who are bright and cherrful and build you up, there is a time for that. We all love the one we care for but to be with them "exclusively" is to deny our own needs. Sue.

Debbie, good for Bruce, he knows how to save money for you and every dollar counts. Hope both of you enjoyed the breakfast out. Sorry to hear you have the snow back so soon, I was hoping your warm weather would continue for a while. I was chatting to Sarah tonight and she had 10 inches....already. Thanks for the story of the Triumph ride, one more nice memory for Bruce. Sue.

I have been packing up my house so that Trev and family can move in. Originally they were coming to help look after Ray but when Ray had to go into care I decided they might as well move in anyway. They want to save a decent deposit on a house and I want them to be able to do that so it is only supposed to be a twelve month’s arrangement. Trev has been so good to Ray and I and it was partly due to his help that I was able to have Ray at home for so long. I feel as if I want to do something that will help him out now. All the time I needed him he went out of his way to be helpful. He and Edie and Lucas are off to see “Mary Poppins” the musical in Sydney tomorrow, they won tickets to the show and an overnight stay in a nice hotel in a radio contest. They were to go next week but managed to get tickets for tomorrow night as that suited them better. They will leave after lunch and settle in before going to the show. Neither Trev nor Lucas has seen a big production musical before so they are in for a treat. I had a disappointing visit to Ray today. I had other things to do this morning so didn't go to see him till mid-afternoon. When I arrived he was wheeling himself around in his chair. As it was a lovely warm afternoon I took him out into the shady part of the courtyard garden. When I looked at him I saw he had what looked like a mobile phone poking out of his pocket. When I asked him whose it was and what he was doing with it he said: "I have been ringing you to come and take me home." He hasn't done that for a while. At the hospital he talked someone into ringing me a couple of times so I had emphasised to staff at the nursing home that it is like a fantasy to him, going home. Luckily he needs someone else to dial the phone for him as he only half-remembers our number, we have had two digits added in the last five years and he never remembers to add them. I suspect the staff member who gave him the phone knew that and so decided he was safe to have the phone. His theme then for the rest of the visit was "I want to go home." I tried to change the subject but that is all he would talk about. When I explained that I wasn't "allowed to take him home”, not until he gets stronger, there are too many safety issues etc, he turned his back to me and wouldn't talk to me. In the end I returned him to his room. He still wasn't talking to me and had one of the other men call the nurse so he could get into bed. The nurse came out to see me and asked if it was what I wanted, I said no but to go ahead and put him to bed if he was insisting on it, which I could hear he was. I didn’t want to make a fuss and get his blood pressure raised as he might have gone into another seizure, another reason I cannot take him home. I felt as if I had a rock in my chest where my heart used to be and cried all the way home. It is not an easy thing to admit that Ray is beyond my help now but he is. It is so dreadfully sad after 43 years of marriage. I am trying my best to put on a brave face and trying to reach a new normal but many times I just can’t face the truth. I have been sorting out boxes of old photos and there we are, young and happy, looking like a married couple, at dances, at weddings, out with the family. We had many good times and only since the major strokes in 1999 has life been tough on us. Being separated but not widowed or divorced is a very strange position to be in. My friends think it is great I finally have Ray in care and can now achieve some sort of life of my own. So far I have only done that in a very limited way. The separation is too raw yet and I don’t feel I want to take on something new or make any changes. You can’t move on with your life when you are still firmly attached to your partner. Ray needs me as his spokesperson and interpreter. I have to make all his decisions for him. I have to pass information to the doctor and to the staff, provide him with clothes, recommend treatment, look after his financial arrangement and pharmacy needs. There are so many things I continue to do even though technically others have taken over my caring role. I am guessing it will be that way for some time, probably for the rest of Ray’s life and that could be some years yet as he is still a relatively young man. Although the nursing home can never give one-on-one care like I can on the whole they have been very good. They seem to have an idea now of what Ray likes and dislikes of how to approach him to get his co-operation, of when to ring me with a problem and when to try something out themselves and see if that works. He has been out on the bus twice, is taken to the community rooms for “concerts”, special morning teas and out to the courtyard for a BBQ lunch, all without prompting from me. That compares favourably with where Mum is. I am just very lonely and my life seems very empty. I asked Trev today if we could bring Ray home, just for a couple of days and see if that worked. He said firmly: “No Mum that would just upset both of you, you know that.” And I do. I am upset now but can imagine how much worse it would be if I brought him home only to take him back in a worse condition. Seizures, falls, TIAs and mild heart attacks have changed Ray even over the past few weeks making him harder to look after and in need of more people to look after his needs. This is not just my story, it is the story of many in our community whose partners have serious medical, emotional and mental conditions that modern medicine as yet has no “fix” for.

Doreen, so sorry to hear you are down and that money is tight. Not easy raising kids these days plus paying bills etc. Sorry your aunt died and that the house, representing so much of your family history, has to be sold. That must be tough for you emotionally too. Hope things improve soon. Sue.

I don't have any advice, don't know what questions you should ask but I did look at that long list of your accomplishments and asked myself why you are unhappy? It is hard to see what you need that you haven't already got (apart from that the stroke never happened). Maybe you need to take up laughter therapy, become a clown doctor, do something that will give you a real boost. Volunteering for a kids charity might do it, or helping out stroke survivors in a nursing home or hospital. I think you did that for a while. Sometimes giving others hope gives you help too. Ray always boosted himself by saying: "there are plenty worse off than me" and then being thankful for what he had got back. Unfortunately now for him that period is over and he will not get any recovery from this last stroke. You are a lovely girl Katrina and I am sad that your medication is taking the colors from your life and you are unhappy. (((hugs))) from Sue.

Ray and I had always planned to retire onto an acreage and I am so glad now we never got to that stage. The house we have wasn't ideal for a disabled person but it is on one level and I can drive the car up the sloping driveway to the path leading to the back door. All in all it was user friendly. Now I am looking at the house as a home for one little old lady and no it is not really suitable, but it will do for the next couple of years. I too have a tree problem and will probably have to get a professional in to deal with it. Maybe next winter would be good timing as I think other things will fill our summer. Enjoy the house that you have and dream of the future one that will be your new ideal. Sue.

Ruth, I was a Lifeline Telephone Counsellor (sucide line) for eight years. I did one shift a fortnight (two weeks) at first, then I became a group trainer nd had to do two shifts a week as I helped others become accustomed to the phones. I did the training course over and over, two a year for five years, and yet at some point each course some exercise would stab me to the heart and I would dissolve into tears and become inconsolable for a while. I used to think I must be so weak. Afterwards I realised that when I thought I was strong everyone else thought I was cold and stand-offish, but when I was weak people thought I was just human and loved me for it. I came to realise that my tears and sense of failure worked the magic when all my knowledge and experience sharing could not. What a paradox life is. Sue.

I'm glad you are back home Mike, best place to be. Keep away from magnets of all kinds, I know that one as a friend had a magnetic underlay and that really set him back big time. Learning your limitations is good, take it weasy, build up slow...then yahoo! back to normal eh? Sue.