swilkinson

Yvonne, it is so sad to see someone you love and admire and look up to deteriorate in this way. I watched my Mum for over 14 years as she turned from a bright, intelligent lady into a bed ridden empyt vessel. It is all so sad. Dementia of any kind reduces the person to a shell of what they once were . BUT the person is still there somewhere, needs to be treated with respect, care and love. Don't know how it can be done but somehow we manage to do it. I looked after my Mum at home for two years along with Ray and then she was in a Dementia Lodge for 8 1/2 years and a nursing home for the rest and that was so sad. She was mean too and I was a masss of bruises, but rather me than someone who couldn't cope with it. I loved her right to the end. Thanks for the update, I can see you have been so busy with life and that in itself is a good thing. You can take some credit for making sure that your Dad is okay and that he has the support he needs even when you are not there in person. And as a person whose sister did not support during the care time thank you that you are supporting our sister as well. (((hugs))) from Sue.

Tina, get out in the sun as much as you can, great cure for the winter blues. I understand about the van, plenty of room as you say. And yes, one more problem off the list.

You did good Terry, glad all went well for your Dad.

I guess I am not the only one affected by the "coming home alone". I went to a daytime Lions meeting today with one of our single Lions, a woman 10 years younger than me. She said she hates it when she has a really good night out and comes home with no-one to tell about it. She does have a sister living in Western Australia ( three hours behind us in time) and does ring her occasionally as she is still up. What is normal in anyone's life? We are all so different.

You have found the secret that it takes some caregivers a long time to find, that it is a new day every day and you just need to appreciate that. You have your husband as a companion now, still able to be with you and a bonus that he can say he loves and appreciates you. Thanks for the reminder, even as a widow I have to remember that a "new" normal after a while is just normal. Sue.

I think this might be the link to see the picture Debbie posted of Kira. http://www.strokeboard.net/index.php?app=gallery&image=3762

Lenny, you are right, you can get complacent, not expect a result and accept the lower standard, or you can strive, exercise, and find new and interesting ways of doing things. I think the more you do the easier it gets. I hope you get a lot of opportunities to put some of that into practice. It must be frustrating though. I remember how Ray hated to exercise. I know he did want to improve but somehow couldn't see the harder he worked the more likely it was to happen. He just wanted a quiet life and no stress. In the end that was what he settled for. I miss him still. Sue.

Kira - cat friend to all the Tuesday night caregiver chat group - is wished a speedy recovery.

A friend of mine got caught out with a larger bill than he should have as the aide told her boss: "He often forgets to sign me off on the days I am there." She got the sack when she said she had been on the job and the person she signed for was in hospital. The case of the disappearing aide is not unknown here so find someone you can report her to, must be someone on the phones at the agency. Also ask for "someone more reliable please" and see if you find someone who is a better match for you.

Still watching, baby eagle is growing feathers now. I realise I see black and white when it is early morning and the infrared camera is taking the film not the one used in bright sunshine. I need to remember to look when I first get up and it is late afternoon there. Thanks for sharing Sally. Sue.

Any recognition is good. A lot of people work hard for a company and never get any recognition. Lovely that Bob did. Hope that makes a difference for him. Sue.

I've just been down to my daughter's for a few days. Being away from home helps me put my life into perspective, sharing someone else's life for a few days also shows me what an effort everyone has to put into life to just stay stable. I know my daughter works really hard in her ministry, in her home and in her community. I know fitting me and her widowed mother-in-law into that picture is not easy, but she does it with much love. I know what it is like fitting visitors into a busy week from the time when Ray and I both worked and had family commitments. What I do when I am there is inconsequential, we usually have a lunch out somewhere on the Saturday and go to church meetings most of Sunday, I join in with whatever they want me to and sit and read or knit when they are busy. There is always another scarf or rug I can work on. And there are the two grandchildren to entertain me. It is good to visit as often as I can without being a burden to them, that way I can keep current with the family news. As usual I found it hard to come back to the empty house. It is hard to sit down to a solitary meal. It is hard to turn the lights out with no one to say goodnight to, or "see you in the morning". It is harder still to have no-one to share the journey with. The journey home on the train was slow as there was torrential rain and gale force winds on Monday so on Tuesday morning the trains went very slow as the tracks had not yet been inspected. I saw trucks delivering piles of heavy gravel and rocks in places alongside the tracks so I guess in some places there were small washaways. i guess a lot of people must think that as a widow I am "lucky", now able to do my own thing etc. But I am lonely and often wonder what my purpose in life is right now. Maybe there isn't a describable purpose and like when I was a caregiver the best thing to do is just get on with the tasks I can see need doing. I have been offered some more volunteer work but as yet I am reluctant to make too many changes, life still seems a bit unsettled so I want to feel stable ground before I step out of my comfort zone. I thought about the clean-up I still have to do here. I will take it more slowly now. It has surprised me how emotional it has been to clean out Ray's tools. As a carpenter tools were a part of Ray, they were extensions of his personality. If you have seen a carpenter at work with an old fashioned plane or wood-working tools you will know what I mean, that look of concentration is very close to love. He'd get such satisfaction out of making a few pieces of wood and some ply into a set of drawers or a bookcase. He made them to give away or pass on to someone who had nothing. A cousin of his with seven kids to feed was often the recipient, all her boys had bookcases made by "Uncle Ray". Now there is just me I need to live a simpler life. I need to be able to leave the house when I want to to look after the needs of the older ladies I seem to be gathering. I need to be busy, and yet I also need quiet time to balance that out. I've always loved to be on my own, reading, making something, just ruminating sometimes, with a cup of tea on my verandah. Where I once could only spend ten minutes there I now spend an hour. I used to think I was wasting time, now I think of it as a kind of meditation on life. Only the good Lord knows the purpose of my life now, I don't need to worry about it. It just goes on from day to day. I know some people don't see a purpose in prayer but I do, always have. For me prayer settles the argument of what to give, how to help. I can do physical tasks locally but when the need is far away the answer seems to be that I give my prayers as a sign of loving concern for another. It doesn't have to be someone important or even someone I know. I trained my kids to pray for ambulance drivers and the people the ambulances contained as we lived near a bridge where we were often woken up by ambulances screaming past. The kids knew that someone was hurt, suffering, in pain inside and that meant they needed our prayers. And on nights when the winds blew and visibility on our part of the river was poor those drivers needed our prayers too. We have some new changes coming at church and I am taking over the Mutual Care role. Those little old ladies I care about I will now care for. It is an extension of what I have always done on an informal basis, but as usual there are reams of paperwork to do too. So many criminal checks, working with children checks, working wit the elderly checks etc. Makes me wonder if people are put off helping because it all has to be so formalized. Never mind, as usual it is what it is..

Looks like we have a NEW BLOGGER!!! Congratulations!!! Sue.

Welcome to the Blog Community Jeri. There is a lot of experience here and both survivors and caregivers will comment on what you post and offer advice so you will know it comes from first hand knowledge and a loving heart as we are all in this together. I looked after my parents and my husband Ray (who suffered multiple strokes) and my mother (who suffered from Alzheimer's and mixed dementias) both died in 2012 two months apart. I am a widow now and still a volunteer here and anything I advise comes from many years of experience as a caregiver and with a lot of love for you as one caring person to another. (((hugs))) from Sue.

Welcome to the Blog Community Cathy. As you know we are very supportive of each other here, both caregivers and survivors. Yes, we know each other through our blogs and on reading someone else's blog will suddenly think: "Aha, just as I am experiencing" and that is marvellous as we trust each other's insights. I hope you find all the love and support I have found on these blog pages and know that we cannot be with you in person but we can be with you in spirit.

I'll be wearing green and celebrating my Irish heritage. St Pat's was my Dad's birthday so we always celebrated that too. Sadly he died in 2000 but he is always with me in spirit.

Katrina, love it when you see the bright side of life. You are still in my prayers. (((hugs))) from Sue.

Congratulations on the new grandbaby. Wonderful news. Ray was not struck by the birth of Alice but when he saw her he loved her. Hope it is that way for you if not for Dan.

I agree with Nancy. You are doing great, battling against big odds but still a winner.

Very interesting Tempii, thank you for posting this.

I am a Lion so don't discuss partisan politics or sectarian religion, not only at the meetings but elsewhere. Good for others to do so though. You sound as if you had an interesting evening.

Thanks Terry, good song, interesting aspects of love. Sadly my dear one did leave me...sigh. But I have all those lovely memories coming back to me now.

I can find a lot to do in two hours. Firstly, you are waiting at the door, the aide comes in, you go out. Out where? Anywhere, shops, park, library, market, riverbank, Curves (30 minute workout). Take a novel, take a flask, take time to drink a coffee, Pick up some fruit and a sandwich before you go.Enjoy being out in the fresh air. The aide can socialize with Ray, put him through some simple exercises, listen to music with him, dial some numbers so he can have a talk on the phone, sit in the sun with him, take him for a push in the wheelchair. She/he can get out the guitar and watch him practice or sing along. All activities are valuable as long as Ray is enjoying it. I only had a two hour break at one stage and I used to walk around my area, drive to the beach and walk on the sand, visit a friend. The visits require accurate timing so they need to be ready when you get there. To do lunch your friend has to be at the venue, seated when you get there and be ready to order. Choose a venue where you know service is prompt as you only have two hours and that is dining time minus driving time. It is all doable, and where there's a will , there's a way.Hope you find a way to make the most of your free time.

I'm glad you have had the opportunity to do this. Very interesting blog Lenny.