swilkinson

Hi Cagin, I'm guessing your Mum is a bit younger than me as you are younger than my children. I know for me when Ray had a stroke and also when Mum was diagnosed with Alzheimers and Dad with terminal cancer there was a period between when it happened and when I got to the stage of acceptance. It is at the acceptance stage the story gets short and to the point. In the stage before, the stage your Mum is in, you feel compelled to tell the whole story. In repeating your story you become at home with it. As time goes on the story changes, the "before" gets shorter and the "after" becomes more acceptable. It is a process your Mum is going through and you will get used to it. She is processing the information as she goes and that is a good thing. I never got over missing what my Mum was. I never lost the feeling that I wanted her to be as she was , friend, confidante, counselor, wise person who had been where I was and knew how hard it was but knew I would get through it. It is part of being a child, part of having a parent. Please be patient with your Mum and do not try to rush her, to get ahead of where she is or she will simply feel you don't understand and stop confiding in you. I know as a family you are all trying to pull together, that is difficult and that in itself will cause tensions. Be accepting, forgiving and loving and all will be well.

It is nice to think of our loved one as being happy and healthy again. Of course we also realise that if this is to happen it is a long slow process to regain what was lost. Your grandmother is still making some progress. I like that you realised she is back making choices again. That is real progress in the cognitive activity of the brain. Keep on visiting, encouraging your mother in what she has to do, keeping the rest of the family updated and encouraging them all to visit and participate in your grandmother's recovery as much as they are able to do so. It is a long haul back to healthy living but every step is worth it. Sue.

Gosh Debbie that sounds fun but tiring. I like a three day break but backing up then to hosting visitors, not sure I have that much energy. But you don't only survive it, you strive on it!

Today I heard three sermons, one at the Anglican Church, one at the Salvation Army and one at the closing ceremony of a women's enrichment weekend. I have just got back home so I am feeling pretty tired. No, I did not participate myself in the weekend but I was a sponsor so I took my candidate (new attendee) up on Thursday afternoon and brought her back tonight. The weekend was at a Retreat Centre but as it is two hours drive from here I decided to stop over in Cessnock on Saturday night so booked into a motel which turned out to be basic but spacious and I have enjoyed that experience. I had a nice day today, two church services, breakfast and lunch with old friends and with the stay last night it was almost as good as being away all weekend. It is the furthest I have driven in a while so was quite pleased with myself. Thursday night was wet and windy and a bridge was out, flooded because of the surrounding hills and some fairly heavy rain, so I had to go the long way around and admit to getting a little lost (30 kms or so) on the way back home. But I got there and back without a hitch the second time so am proud of that achievement. The new members tonight gave a small talk about how they had done, how they had felt during the weekend etc and two points really struck me. One woman said she was a quiet and reserved person and found herself amazed when she found herself skipping and twirling and singing as they circulated the grounds this morning, that is certainly an achievement for a quiet and reserved person. And there was a second woman who said she has always been a giver and at last has learned to receive from others. I was most impressed with the new revelations the newbies had discovered, both about themselves and about others. Isn't it wonderful when we have those times of refreshment and revelation? Ray and I went to this type of renewal weekend in 1996. I knew I would enjoy the experience but doubted that Ray would as he was not someone who made or liked to see a public display of emotions but he did have a great time with his fellow retreaters and although I wouldn't like to say he was transformed I could see each time he encountered one of the men on his weekend how they felt they had a special bond. I saw one of them tonight, I doubt he recognized me but it was good that I recognized him. I thought to go over and tell him that Ray had died but in the end I didn't. It was an upbeat evening and I didn't want to introduce a more somber note. I wonder how many of us here belong to a support group of some kind apart from Strokenet? I know there are only a handful of caregivers that regularly come to chat although many more do belong to the Blog Community and receive love and support there. I know chat is not for everyone but we do all need a support network. Some people belong to one or more support group in real time and get a lot of benefit from there. I have belonged to several and although it did not always fulfill my needs it did ease the pain to know that others were in a similar place to where I was, looking after a stroke survivor. Of course Ray also became a person with dementia and so many other illnesses and conditions and I never found support groups for all of them, just the two Dementia groups, one run by a government agency and the other situated in Mum's Nursing Home. Today at the Salvation Army Hall I met a man from my Shirley's Corps. He went to College the year after they got to Shell Harbour and he is the Captain at Cessnock now. We recognised each other and he was full of questions about some of the people in the Shell Harbour Corps so we talked about a lot of them over morning tea and I answered his questions as much as I could. When we move on for whatever reason there is always a yearning to hear about how our old friends at that other place are doing. Shirley and some of the folk he knew are going to come up to his Corps for a visit at the end of next month, another form of support for a small struggling church. Heaps to do here in the next few days. I can take a few days away but when I come home I look at my home with a critical gaze and wish I had a fairy godmother who could wave a magic wand and make it all it could be, instead of having to do it all myself the hard way. Of course I could take it easy for a while first but the work would still be there waiting for me. That fairy godmother visit isn't going to happen is it? But I did have a lovely day today so can't really complain.. I know I find support, from friends and family and others in the groups I have belonged to to be so beneficial to me, it certainly allowed me to look after Ray for longer and now helps me as a widow.Especially as the chat girls are more than likely when I have done a negative blog or post to remind me that they wanted me to look after myself. And great advice on Strokenet, both the forums and in the Blog Community was always freely given and it is one of the things that kept me going for sure. Have a good week, (((hugs))) from Sue.

Cagin, it is painful for the ones who love the survivor to see that blank expression and wonder what is going on in the loved ones head. We have to learn to take what progress there is, research and try for more without stressing them. It is good your grandmother is going to have Physio and as an in-patient. Who will go and learn to work with her after she comes home? There is a lot to learn about the right way to do exercises, which ones benefit the most etc. Over a short period your grandmother has made some gains, the family has got into a routine, that will need adjusting when she gets back from her stay and there is more to do. It is hard on those who are caregivers, emotionally and physically but there will be help for your mother with the physical (the nurse), she will still feel the emotional strain. Take care of each other.

Julie, this is all very hard on you, our children are so precious to us and seeing them in pain is so distressing. I am glad you got over the panic attack or whatever it was as a trip to ER would have been yet another strain on you. Larry may or may not know when to call 911 so if you can do some written instructions so he can get help right away from a neighbour or friend. I dreaded that that would happen to me but it never did happen. It is good you are back blogging again. Sue.

Katrina, I must have missed this very positive blog. You have issues that are a challenge but you are doing your best to overcome them. You are an inspiration to many here. I hope you do find a suitable job, I know you can do so many things well, just have to convnice a potential employer that you are the one they need for the job.

Yes, been there. No to babysitting the kids because I didn't want to change three lots of diapers, Ray's included. Not being able to hear others prob;ems because of the thoughts going through my own head when Ray was diagnosed with various "this one might kill him" illnesses. BUT you have to come out of this alive and I planned for that. Remember 50% of this married life is yours. Don't let looking after Dan encroach on that. When it does walk away, telling him: "I have to take some time for me right now, you will have to work it out on your own." I did that to Ray a few times, came back from my time out in the backyard (vigorously pulling up weeds helps) and he would be asleep, all the tension had worn him out. No, I don't have solutions to your problems but I do hear you loud and clear. (((hugs))) from Sue.

Everyone seems to have it. If you do have some warning points send a post to maria and see if there is an explanation.

Post Julie - just post.

Inevitable that it rained today and is supposed to continue to do so for the next six days, no Spring flowers without showers I guess. But at least I had a foretaste of the Spring to come. Sue.

The birds are going mad today, lots of puddles to bathe in, green grass, plenty of worms near the surface so lots of birds out and about. Plenty of nest building too as I have seen the smaller birds flying around with dry grass or twigs in their beaks, and several of them are squabbling over a favourite tree for that, my paper bark tea tree out on the front footpath.We were given the weather forecast today of another wet day and low temp but Mother Nature mustn't have been listening as it is simply gorgeous out. It was nice up the back so I took some bromiliads and put them around the old tree stumps so that will brighten up that part of the yard. I have been out gardening all morning. Current boarder next door John who is still waiting on a job placement after his last job with a government agency sunk out of sight at the end of June said he would clear down the side of the fence for about $100. There is a lot of herringbone fern there and a lot of fallen sticks from the big wind last year so it needs doing. He is ten years younger than I am so should get it done in a reasonable time. It all needs a good tidy up and maybe the metal roof sheeting will finally finish up out the front for the metal men to collect. That would be another plus. When I was up the back I heard a scrunching noise on the edge of the cabin roof, I wonder if a pesky little possum has taken shelter under the eaves again? I still haven't had the last work done on the cabin, the roof is on but the ceiling was not replaced so I guess I had better start ringing around and getting some quotes again. I hate that part of getting a job done, getting quotes, waiting in for tradesmen that never give you a quote etc. I think I am accepting that I need to make some changes now, not only to the house but to my life. I don't want to make any rushed decisions, I am mostly talking to other widows about what they have done. It is impossible to go back to the things I was doing when this all started and I don't think I would want to. I have had a lot of good experiences as well as bad ones and want to continue to have good experiences. I wish I had Ray here with me but almost two years out am less sentimental and more of a realist about my life experiences. I only have to read on here to remember the way things were. I am not looking at life now with a rosy glow but in a more realistic way. It is wonderful to have the sun shining in a clear blue sky. It can be a sad and lonely neighbourhood when the winter wet season is in full swing. That is when I really miss Ray. Because of his many deficits he was always with me, inside in the warm, out on the verandah doing his exercises, sitting doing his old word search books (I found another in a drawer the other day). He was a lot of hard work but that filled up my days and sometimes my nights. I felt worth while in what I did. When I lost Ray I lost my "job" as well and I think that is a part of what I have been mourning for so long, that all seemed to be my purpose in life. Even in the nursing home at the end of his life Ray was my companion. Going to visit him was my reason for getting out of bed, getting on with the housework etc so I could get out of here and be over at the nursing home by 11am to help him with his lunch. I still can not get past that feeling of wanting to have him here with me. There is still a lot of guilt about being the survivor of a couple. I don't know why but sometimes when I am out enjoying myself, particularly laughing I feel as if someone will come up to me and say: "Don't laugh so much you are a widow now." I want to make new friends, I want to renovate the house and refurnish it to be "Sue's House". It will be two years since Ray died in a months time. And three years two months sine he went from the hospital to the nursing home. But this is the home we bought together 46 years ago, I look around and see his handiwork everywhere I look. It is the place we lived in, raised a family in, welcomed the grandchildren into. It is hard to think of it as just Sue's House now. I don't mean this blog to be gloomy. Hard to be gloomy when there is such a honey of a day I can see it from here looking out across the back garden. That is what I mean about finding some balance, balancing my life with my expectations, realising that I can still dream dreams but cannot expect them to come true in the same way they did as I anticipated marriage, the birth of our babies and all the other good things that came into my life. Let's hope though that there are still plenty of good times ahead.

Asha, you have been a shining star in my life since I joined Strokenet. I am a "worry about everything" personality and your "go with the flow" philosophy was foreign to me. Now I am accomplishing it some of the time. My stress levels now I am a widow and not a full time caregiver are much lower of course but I still can get stressed. I imagine you are here saying : "go with the flow go with the flow" softly over and over and that helps me tremendously. Sue.

Debbie, I know listening is the key. She has rung a couple of times and come up once already so I guess she will set the pace. I am glad I have to time to share. Old friends are precious and those that have been there for me more so. I had another example of listening yesterday as I ran into an old friend who's wife had a stroke about a year ago and his wife is aphasic after it. We had some afternoon tea together and within half an hour I could understand some of what she said. It was good to be able to converse with her as she is a really sweet lady and it is such a shame she has this disability. Hope to see more of them in times to come. Sue.

Welcome to the Blog Community Judy. Lovely to meet you in chat, isn't it wonderful there for that hour in an atmosphere where we all get to express ourselves and everyone understands. I am so glad you decided to do an online journal as people will get to know you better in a wider context. As we said sleeping is normal and not all survivors take to exercise or see that as the pathway to recovery. It is frustrating, I know as my late husband was one of them. But you gradually get used to their limitations, encourage them if you can, take advantage of visitors and family to provide some stimulus. get out and about as much as you are able to. You will get to know when it is safe to take some time for yourself and that will be the time to work out how you can get back to some of that craft work. I crocheted a lot of rugs while Ray slept! A friend of mine took up quilting and had a basket full of pieces she was working on beside her chair at all times.And take some time outside too so you know that you live in a bigger world than the four walls that mostly surround you. (((hugs))) from Sue..

Sorry this happened, falling can cause a lot of dramas. Do you do exercises to prevent falls? Ray used to do some from a video someone gave us, made for people with Parkinson's I think but simple enough for Ray to do. The side to side stepping even though he had to cling to a rail to do them and the stretching forwards and backwards were designed to help rebalance you. I hope the seizures were caused by the fall, it's great there was no brain bleed. It is frightening to have had the experience so I hope you are none the worse for it all. Sue.

A nice photo there Sandy so your phone, old though it is, does still have some handy features. Glad you enjoyed your day out.

Ladies, I would like some heat here on the beautiful Central Coast, today it is cold and wet and we are promised wild storms so the weather has nothing to recommend it. Roll on summer! Julie, a quiet summer is a good summer, I do like long peaceful stretches of life where nothing is good or bad, just going along. ​So sad about St Louis, here too racial tensions can boil over and people express their anger and frustration by destroying public property. It is a sad state of affairs indeed and one requiring expert handling. In the meantime I would shop locally and avoid travel if I were you. Julie, life is what it is, Ray would never exercise independently as you know and I would envy the progress of others who would. He too had the swallowing difficulties and I worried about his basic nutrition. Got to love them the way they are though. Sue.

Nancy, I have no idea what you should do. I have heard this scenario in Dementia classes so I always associate it with brain damage and as we know there is no "fix" for that. Going away was okay for me as Ray accepted going into care and as the place he first went into made a BIG fuss of him he was okay with it from then on. I wish there were carers that could understand our men the way we do and reacted to them in the same way we do but on the whole they just go by what they have learned and that has to be okay. I hope you feel you can get away, you certainly need the break. Sue.

i think there is a lot of people in a similar situation, wanting to go home and yet knowing that maybe that is not an option so family members are asked over and over. Just reassure her - soon, as soon as you are stronger, when the doctor gives the go ahead etc. It is better to put it on the doctor or the specialist so you can "blame" someone other than yourself. Make sure you have a routine that will give you some time to yourself too, caregiving is hard work and time off and time out is scarce. See if other members can be involved in training too so you have the option of time away from your Mom once you settle in together Keep us updated with her progress. Welcome to the Blog Community. Blogging is a useful tool to track her progress and how you are settling in as a caregiver. You can ask questions in the forums and come here to vent when you need to (as you will). We are here to help and support you. Sue.

Don't get disheartened if there are not improvements every day. She will rest and wake when she is ready. She will need voices around her she is familiar with. Keep questions to a minimum as her brain will have trouble processing so use statements: "It is a lovely day isn't it?", are you enjoying the book, I am." that way she can just nod and smile. It is good your family is able to look after her, at her age that will make all the difference. Sue.

Good to have you back Fred. I am glad you have had a nice vacation and your wife enjoyed catching up with her family. I know your little grand daughter will be loving you being back with her and so will her little dog.

Debbie, so sorry to hear about the death of your old friend, it is tragic that we lose so many of those who have had a positive effect on our lives and we mourn them all. My sympathy to yourself and your friend Chris, I know you will help her through this. I would maybe have blood tests done on Bruce if this weakness continues too long. It does sound like some kind of virus to me but maybe Colleens thought that it is the Botox needs to be followed up too. I wish him a speedy recovery. I hope all goes well for the funeral. Will pray for Chris and family members and friends like yourself. Sue.

Nancy, Dan is not doing this to annoy, he is doing it because he is caught up in something even he cannot understand. I don't know how much love it takes to overcome depression but I'm guessing that love doesn't affect it at all from my observation. So you have to get used to it and live your life around it. And that includes making your own joy. I think the best thing about funeral homes is the smell of brewed coffee...lol. I haven't lived with depression as full on as Dan's so I can't give advice but here is another shoulder when you need it. Sue.

I have been very busy today, I am tired but that wound up kind of tired you get when too many things have happened. I went to my friend's son's funeral today, he was only 47 and died of cancer, leaving a wife and three small children,so sad. I had known him since he was two, seen him grow up, his mother and I became firm friends. He and his brother and two sisters often visited and he played with my kids, particularly the boys. Even when we lived away for ten years we and his family kept in touch, visited and participated in each others lives. Of course, as happens these days they went separate ways from high school on. There were many young people at the funeral plus his parents' friends, his wife's friends etc. It made me think about how we support those in grief. I have not lost a child so although I will support his mother in every way I can I cannot know the depth of her grief, all I have to offer is my continuing friendship and support as she goes through this. Her husband is one of those laughing on the outside people and I know will not seem like he needs to talk, but if he does I will offer my silence as much as possible, my love and support is for their whole family. I love them as you do those who have been true friends over decades. I have been down to my daughter's place, I went by train as usual and she brought me home by car as the funeral was 11am and I could not get back home, pick up the car and be over to the Crematorium in time. It is a three and a half hour drive from her home to here so we left pretty early. It would have been easier if I could have done my usual train journey but circumstances alter cases and so her bringing me home turned out to be the viable solution. The bereaved family were pleased to have her at the funeral. With her loving ways she has always been popular among my friends as well as having many friends of her own. She asked me to come down although I don't usually go there in the middle of winter as her ten year old daughter had been complaining that other people in her class had grandparents to coming to the concert and Grandparents' Day and she didn't. I can't be there next week but I was there Wednesday night to go to the concert, that will have to be enough. When your children move away they should factor in the fact that you as a grandparent cannot be there for all the important milestones, tough as that can be, the distance is an obstacle we cannot always overcome. I did enjoy the time with them even though as it was wet, cold and windy, much like the weather here but a few degrees colder. There was quite a heavy frost this morning and as the days are still short we didn't have not much opportunity to get outside. I did catch a few sunny rays Tuesday afternoon before the clouds rolled in once more. The grandchildren both had colds so no big hugs or snuggles as my daughter didn't want me to catch cold so we were all pretty quiet, even the pets. It will be a better time to go for a visit when the days lengthen out and it is a bit warmer. There have been a few ongoing meetings on the support role played in the Church by the Mutual Care Team and today, just back from the funeral, I went to another one. If you listened it sounds like just more words but we are gradually working on a strategy to try and ensure that everyone in the congregation and the extended church in the form of those who do not regularly attend but do come to church to one or more of the groups also feel included. We are hoping we can reach out to them and provide them with help and support when they need it. It is a big task. So how do you provide ongoing support? My idea is to stay in touch with as many people as possible, hand over care to others when appropriate and keep asking if what we are doing is what people want. I don't know if I am on the right track here but I hope other people will give me feedback so I can measure results. Though not being able to measure your result or getting much feedback seems to be the norm in churches. You only get feedback if you do it wrong. In the family, in the neighbourhood and on here I try to offer appropriate support and feel as if this is right for me most of the time. We all have doubts about the effectiveness of what we do I know and I try not to make that the focus of my life. I try to do it in a way that enriches me as the giver as well as the one who I give support to. Don't know how often that works out the way I plan though. Sometimes I am operating in the dark, uncertain of what to say and what should be done. Throughout Ray's illness I participated in support groups and still do. I was grateful to those who supported me and know that without their support I would have gone under, overcome by the work load, the pain and the suffering of Ray, and the emotional turmoil I went through as his caregiver and still in some ways the family supporter. It was very tough at times. But I believe that through all of this I grew as a sensitive and caring human being. I believe that what I experienced was not for nothing but that the things I learned can be useful to others. Those others are a part of the many groups I participate in. And I do believe the care is mutual, for when I give I also receive.