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New to dementia journey - Page 20 - Carers UK Forum

New to dementia journey

Tell us a bit about yourself here.
938 posts
Morning BB. I don't drive so getting to the lovely couple of garden centres isn't easy. I meet my friend once a month and we have a late breakfast together. Always enjoy that. Last time I went to Solihull on my own I walked into a coffee shop to treat myself. Couldn't do it I'm afraid. All the happiness of the people made me feel sad. I've had soup and a sandwich with hubby a couple of times. Im inclined to use tea time as my reason to leave at the moment. He is occupied with getting sorted for it so it's 'easier' for me to leave.
I was talking to another visitor who tells me he can't face eating out without his wife. I'm wondering if it may just happen in time. I felt at a very low ebb last night. Sorry for myself even. It won't do. Doesn't change the situation. Xx
Hugs, starting a new life is difficult. My husband hated shopping, so I've often had a coffee treat on my own. Try the coffee shop again, when you are feeling positive and thirsty. Take a new magazine with you, or a book, then you can read it so don't have to pay attention to anyone else. If you go in when it isn't busy, you can choose where you want to sit, so not in the middle of a room surrounded (I like sitting at the side or back). Good luck. The first time is always the worst, the first step the most difficult....but it's just one step like all the others.
Pet, you are doing really well on your journey but I do wonder if a bit of a chat with your GP may help. You are doing so much looking after hubby that I think you may be needing a little help for yourself, some counselling perhaps or a magic tablet to help you ease yourself through stressful situations? I don't know what they may suggest but popping along wont hurt and does fall under the heading of being kind to yourself
After my husband died, after 2 months of very little sleep, my GP prescribed a very light dose of Amitryptilene for me. Even so, I just took a half about 8pm, which saved me from "stewing" over everything. If I woke at night, rather than doing accounts at 3am, I could settle down, stretch, and relax without everything buzzing round in my head. As I felt better, I gradually reduced the dose, until I was free of them. I still have a packet, in case I get over stressed with problems over my son's care.
I'm very nervous of taking medication. If I have a headache I can only take 1 painkiller. If I take 2 I get sleep paralysis and awful dreams.
I am going to contact the admiral nurse and try to have a meeting again. Feel a little calmer today. I did visit. Not too bad. I've been to a neighbour this evening. She's on her own. Had cuppa with her and a chinwag!! We are becoming Friends and are beginning to trust each other. It breaks up the evening. Am getting to quite look forward to going. about once a fortnight. She had kindly said I'm welcome anytime and she does make me welcome. Xx
GP may not prescribe anything but I do think he needs to know how you are doing. He may have other ideas too such as local support group or well being tips.
I know you are trying so hard, I just want to make sure you have all the help and support you deserve
Xx MrsA
Oh dear. I've had 2 pleasant visits with hubby. Today was ruined. My daughter was there when I arrived. Both sitting in the garden. Happy enough. I had some paperwork that needed to go to the manager. Eventually found him. Somehow the talk got round to staffs feelings. They've misinterpreted something I said about when I was working with teenagers?! Not all staff I might add. Also they feel the family are watching for any incompetence. I have felt a barrier of late. Am.upset by all of this. A trusty new friend suggested I email the manager to reiterate my explanation etc. I have now done that. Haven't apologised as such because I haven't done anything wrong. Some seem so hyper sensitive.
I was ages with the manager. Hubby was getting agitated. Toilet issue again. He was annoyed I had been ages. I was getting fidgety as well. Then he was unpleasant to the staff and I told him off. Daughter felt that was wrong. It was really. I was in a state about what had been said and guilty for being so long and reacted badly to hubby. So Mr guilt monster,youve won today!! Lesson learned. If I have to see the manager,go to him before hubby. Hopefully I won't have to again. Hopefully the staff won't see us as a trouble making family. We're not !
I feel better for emailing, thank-you new friend! Really am just venting.
See what tomorrow brings.
I have explained my dilema to GP about help/coping, he's not interested. I explained about complan shots to substitute meals for nutrition. He said they are only for people with cancer or similar. I received a letter from GP new mentor advisors. They are a new service to mentor carers and received a grant to provide support etc. I was told I would receive a phone call to explain and then a visit. That was end of March, still waiting HA! support, they don't know the meaning of the word.

After all these years of campaigns and god knows what the reality for carers is no better, and yet we go on and on about help, support and how wonderful life can be. I am woken each day at 3am with the reality of wet bed and sometimes faecal soiling. The carpets are soiled and there is always a pool of uriner on the bathroom floor not to mention the faecal smears on the doors and handles, wc seat, door post, towels and the rest. I can't keep up with the constant changing of trousers and underwear and all the washing etc. That is my reality.
Oh dear Alan. I really do feel for you. This can't go on! Can you phone social services and explain its all getting too much. Or click onto the help and advice tab at the top of the page. I haven't used it myself, but have read numerous times that it's very very helpful. Other's on the forum will be able to advice about assessments etc more than I can at the moment. Please don't struggle on your own
Pet, in respect of the care home staff thinking you are out to catch them out or whatever, I wonder if it's something as simple as the fact that you may, perhaps, be visiting your husband more often than most residents get visitors??

If most of the residents are very elderly, and are people's parents, not their spouses, then maybe most of the residents don't get visited nearly as often as you visit, because it's your husband, not your mum or dad??

It's only a thought, but if that's so, then maybe that's why the staff think you are 'checking up on them' all the time.

I do think you are probably going to be, perfectly understandably, far more 'concerned' about your husband and how he's getting on there, than maybe you would be if it were your very elderly parent?
938 posts