swilkinson

Good effort by all of your family to keep you grandmother progressing in her therapy. I am glad you have a good nurse/caretaker who is firm but kind, that makes all the difference. I took care of Ray for 13 years and it is a hard job but with help you can do so much more. I am glad you took to the idea of pictures to help your grandmother learn new words. Ray was given some flash cards with common actions on it as some words like swimming and skiing are hard words to relearn. I guess you have those in your language too. Think of action words you can put into sentences such as the girl is swimming which Ray found hard because of the facial muscle weakness in his left side. Don't hurry here though as she will progress at her own pace.

Pearl, I think this is acceptance. Acceptance is finding a place where you can still go forward but have accepted that you can't go back. Took me many years to get to that point as my husband Ray had stroke after stroke. But in the end I knew it was the only way to live. Good for you for recognising that.

Asha, I am sure he will someday realise the effort you have put in in all that he does. But he has to do it his way, I know that as the mother of two sons and grandmother of four grandsons. Girls are different, they love to please but boys like to do things their way.

I only have one of Ray's family that I am still in touch with, his older brother's wife. I rang her on Sunday night in answer to sundry messages left on my answer phone and sadly learned that one of Ray's brother-in-laws had died. I was away from Thursday to Sunday so I missed the phone calls and missed the funeral which was yesterday. I may not have gone anyway but I did send a card to Ray's sister. His two sisters were my bridesmaids and as I have a large photo of my wedding group on the wall I "see" them every day but have not seen this sister for at least twelve years, maybe longer as she was the one who did not come to Ray's funeral. It is another happening that makes me realise once again that life is short and if I want to do some of the things I have planned I have to do them sooner rather than later. So back to planning trips for next year. And trying once again to reconnect with old friends. Our lives go off at a tangent from the main plan so often. When Ray was alive I often thought I should have as an epitaph the words from the John Lennon song : "Beautiful Boy", "life is what happens when we're busy making other plans". Now my life has slowed right down, no rush to get him up, dressed, breakfasted etc, only me to get up and get about the day's business. It is such a different life as a widow but I think I am growing into it at last. I had a good time away with my Apex40 friends, 19 of us in all, three singles, the rest couples. Yes, I did feel envious of the ladies whose menfolk got them a drink, sat beside them, held hands etc but these are my friends and I want that for them. Yes, I and the widow I share a cabin with on these occasions now did feel a little left out as they went off in cars to do their own thing but we did find one set of small boutiques and browsed around and enjoyed the day and the company. One of the men did our BBQ for us and other women dropped into our cabin to stay and say "hello" so it seems they are also getting used to our new status. Sometimes I feel like the pioneer in this group of mostly married couples, and I guess they are all on a learning curve too. Spring is turning to summer storms, had a doozy last night, all flash and crash, not a lot of rain here though fierce winds hit Sydney. I hunkered down under the quilt and listened to the wind howling outside knowing that this time last year a freak wind blew my cabin roof off. That is safe so far this year. But as a widow, a woman on her own, I am afraid that something will happen that I can't fix, ridiculous really as I know I have good neighbours and family only three hours drive away but nevertheless there are times when I do feel very alone. So far there has been little growing in the garden but my tomato plants are in bloom and the possums chose to eat all of Brett'e herbs instead of mine so I do have parsley and basil and mint growing again. I love fresh herbs for cooking, herb fritters, herbs in scrambled eggs, herbed chicken, I have lots of herbed recipes. I must confess I hardly ever cook a meal from scratch, I got so used to cooking and freezing meals ahead when Ray was here and time was short that I still do that, cook mashed potatoes, defrost a casserole portion, combine the two, cook pasta, defrost a neopolitan portion, combine the two, you get the idea. I still don't like to do things I would have done with Ray if he had still been here. I think I still have survivor guilt, that feeling that says: " I shouldn't be enjoying myself when my loved one is no longer able to do so." I know that is silly way of thinking but it continues to be one of the things that holds me back from fully enjoying myself. I do wonder in a way if that feeling is something to do with self-protection. I saw a program recently on grieving and one of the commentators said that he thinks that some women still wrap themselves in widow's weeds and carry the grief with them wherever they go as a way of keeping the world at bay. That would seem out of touch with life today but maybe what I feel is in some ways similar I still have to remind myself that I am a work in progress. Yes, I can go out and enjoy myself. I can sing again and my laugh is back to full strength. One of the women on the weekend said that she knew where I was as she could hear my laughter five shops away. Now is that a good thing or a bad thing?

Sarah, you are a wonderful woman, I don't know how you manage it, all that it takes to take someone in Gary's condition on the trips you do. Hope somewhere deep inside your Mom does realise the effort you made to be with her on her 90th birthday. The quality of Quality Inns belies their name! You know of all the glitches Ray and I had travelling and he had only half the degree of difficulty that Gary has. But like you I kept on plugging away for as long as I could. (((hugs))) from Sue.

Cagin, thank you for the update. I hope your grandmother and your mother get back that closeness that mothers and daughters so value. I do think about them and of course they are both in my prayers. Sunny days ahead for all of you as to try to bring laughter back to this special person, your dear grandmother.

One step closer. It is hard to get it all right but you can do it !!! Go for it!!!

That was my first thought too, get a second opinion now that you have googled all the facts and know what the specialist is talking about. I can't see the verdict of "nothing can be done" is a very professional one! is there therapy that can ease the symptoms, is there a procedure that can alleviate ANY of the symptoms and give you some hope that one little increment at a time things will get better? Ajcee, I wish there was something that would make you life easier, more pleasant more enjoyable. The world is a wonderful place and yet seems you are living in a dark corner of it right now. Dream dreams my friend and then see how many of them you can make come true.

Good to hear from you again Fred. We have sorely missed your blogs and your encouragement to others. Good friends are hard to find and you have been a friend to many here. Go on healing, my thoughts and prayers are with you my friend. (((hugs))) from Sue.

I've been away fro a few days so didn't see your entry. Glad you had a day out with your girlfriend, makes you feel good doesn't it?

It would be hard to stay optomistic in the face of all you have been though in the past 13 years. I know you have good days and bad days and the bad days seem to be in front right now but it will tail off eventually. It is hard for other people to walk the walk with you and I think that is why the comments are not there now. Some of us have been doing this a long time though and we do send you our thoughts and prayers. (((hugs))) from Sue.

Dave, you are the best! Your drive and dedication are a real inspiration. Well Done!!!!! Sue.

Agreed, just a little TLC makes a lot of difference and we can pay that forward and make a difference in the world. I call people like that angels because they bring us a little message that says: "You too are worthy of love." (((hugs))) from Sue.

Welcome to the Blog Community. I cannot say anything about being a survivor as I was a caregiver for 13 years to my husband Ray who had multiple strokes. I watched him battle back from the edge quite a few times. I always admired him for that. I hope you can do the same. I think denial is one of the normal range of reactions at this stage for you. I hope it goads you on rather than slowing you down. It takes guts to do what has to be done to get better. I know that from watching Ray. Sadly I lost him in 2012 and I've stayed on here as a volunteer. I look forward to getting to know you better. Sue (Blog moderator).

My life as a widow feels like that sometimes too. Turning those houghts into poetry is a good idea. Hope things improve for you.

Debbie, you have done so much in such a short time you do deserve some R&R. Somewhere with flashing lights and cocktails? or somewhere quiet and meditative? Sorry about your pulls, lumps and bruises, that too is a part of being caregiver sometimes.

Nancy, another bad patch for you and Dan by the sound of it. Persevere my friend and you will come out from under that cloud again. Yes, people like Dan will have falls because like Ray early in his stroke history, he thinks he can do something that reasoning would tell him he cannot. It is not preventable and you just get to live with the damage and hope it is minimal. If you can manage the Vegas trip do, if it is impossible send your regrets. (((hugs))) from Sue.

I got up today and the world was silent, for the last three nights I had my three grandchildren here so I got up and two voices said: "Hello Granma". My granddaughter was still in "her room". She always says: "Will I still be able to have my room?" She has had it since she was a small girl and it is hers till I leave here I guess. She is a teenager now, withdrawn, playing her own music, not joining in the activities but on Saturday night we watched "The Princess Bride" one of her favourite movies and she sat and giggled and enjoyed our company. That was a blessing. I had three fun mornings with them, we went to the lake just to the south of me and the nearby park on Thursday, to the beach and another park on Friday, that finished in a wailing match as Alex ran across the park in his bare feet and got bindiis (small sharp burrs) in both feet. So we came home to get first aid for him. Always something with kids. It was my first swim of the season and the water was cold but not too rough, the little boys splashed around and Tori swam backwards and forwards further out like a majestic swan. She enjoys the water and the time apart. On Saturday we went out to breakfast, something they seem not to be familiar with. Ray and I sometimes went out to breakfast. His favourite breakfast was hot cakes at McDonald's with a chocolate thick shake, though we also went to the shopping centre and got a traditional breakfast which he also enjoyed but we shared it as he never had much appetite of a morning. I really miss those days. I know he was sick but he could still be great company when he was in a good mood. Caregivers, please appreciate the good times you have together, one day they will come to an end. Survivors try to do some fun things with your caregiver, you really need to build up good memories of shared times together. This is the October long weekend that we used to call "Labour Day weekend". I think that name is frowned on now. It is the last weekend of the school's two week Spring break and there is a lot of traffic as Sydneysiders have a break close to home and the numbers double here on the Central Coast. We locals have to be patient because getting onto the main road and into the shops and parking is an art with so many extra cars on the road. This morning though as I drove to church the roads were almost empty, obviously all those nearby party animals whose loud music broke into my sleep last night were sleeping late this morning. Grrr! Tomorrow is the start of another busy week. People keep ringing me and asking if I can do this and that, I tell them it is hard to fit extra things in this time of the year. As you can imagine with summer, end-of-year activities and Christmas coming on fast we are very busy here in the southern half of the world. I would like some free days so I can go swimming and enjoy the beauty of the local beaches. No point in living close to the beach if you never see it. I have the Lions Club fundraisers ahead too so have to fit them in and a couple of weekends away planned. Yes, I have the freedom to do that now. And I am slowly learning how to plan a break for myself, that has been a while coming. Mainly thanks to the girls in chat I am feeling better again. I know that it was just the boredom of the every day routine that got me down for a while. I think I still have survivor guilt, that guilty feeling that says: "I shouldn't be enjoying myself when my loved one is no longer able to." I don't know why it has taken me so long to get to this stage of accepting that there is only me now, I think in a way it is because I don't want it to be that way. So thanks to all who support me on this site, in chat, on the forums and here in our Blog community. Your support means a lot to me. Sometimes I feel as if I could fill pages with what I miss about Ray. I think I have got this far into my recovery pretty well but sometimes one of those sudden waves of sadness washes over me and I feel as if I am being swept way down that black hole again. Watching couples walking hand in hand on the beach on Friday made me feel sad, that seems to be one of my triggers. No, it is not depression it is knowing that what we had is over and nothing ahead will ever be the same without him. Even getting my memories of what our life was like before the strokes back is painful. I want life to be like that again. Okay, get off the pity pot Sue and get out and do some gardening.

Judy it took me a year or so to get to where you are now. I was so protective of Ray and knew I could do everything better and faster and so I did! Eventually, when he broke his hip the therapists said he had to do it all himself. It was painful to watch him getting dressed and it could take up to 45 minutes but he did it. With time he got quicker too. Unfortunately we went through this process stroke after stroke but I never thought I should do it all again. Ray went to bed early and that was my quiet space too. See if you can get a family member to sit with him for a few hours so you get out alone sometimes, you really need those breaks. I remember having to take Ray everywhere even into the ladies hairdressers when I had no help and how difficult that was. Hope you get a break soon. (((hugs))) from Sue..

Sandy, getting back to basics is always good. Good food = good health for a pre-diabetic like yourself. And losing those pounds? I put on a lot of weight sitting beside Ray in the nursing home and have not got it off but that is part of my goal for this summer.Part of my goal is to get a waist because I intend to wear skirts and go back to a more feminine look. Dancing is good for weight loss and I use JUST DANCE on my Nintendo Wii and can dance for up to an hour now. It is combination of dancing and karaoke and in the privacy of your own home who cares? Just have some fun with it like I do. Sue.

Katrina, great news, long may it last. I think your body probably responds to the exercise and the stimulus you get when you go out as I have noticed you sleep better when you are active, as I do too. Enjoy your life as much as you get, I look back at my youth now and think how fast it went.

Every little step forward counts. That is the beauty of keeping a blog, you can see when each improvement occurred and treasure it.

Pearls, vent away, your feelings are your feelings. I am not going to tell you it will be better, how should I know? But do make your life as good as you can, you're the one who has to live it. Ray and I had good times and bad times, him as the survivor, me as the full-time caregiver but I betcha both of us would have swapped back to our old lives in a heart beat. Unfortunately that has been left out of the options list. Keep on blogging. With (((hugs))) from Sue.

Tammy, welcome to the Blog Community. I am Sue, former caregiver to Ray for 13 years, Ray died in September 2012 and I am still here as volunteer. I want to encourage you to use your blog as a personal diary, to ask for support, to give information that might be useful to others and to just tell us about your life. I even use mine to vent sometimes when there is no-one in my life who wants to listen to me. We are not experts here but all have a lot of experience, either as a stroke survivor or as someone who is caring or has cared for a survivor. We are a great support team and you are very welcome to it. Sue.

Tina my friend I want you to take all the time you need. Losing your Mom is a big loss and you will have ups and downs for a while. We will be here when you are ready. (((hugs))) from Sue.