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magic
16th October 2013, 14:03
Need your help to give me confidence in making the winter months enjoyable for Peter. Visiting cates for treat is now out because of choking. Conversation is sparse because of speech difficulties. Walking, even short distances is now impossible.
Visits to parks etc will be dependant on the weather. He seems too tired to listen to our wide library of audio books. The TV is his main form of pleasure and this was never the care before he got MND. I do burn essential oils and play music CDs. I arrange company but have to phase it and Peter will usually last about one hour before he needs to return to bed. We visit the cinema and that can continue. Hand function is so poor. He does read history books but can only engage with them for 15 minutes at a time.
This sounds as though it is me who has the problem not Peter but I do need some fresh ideas.

Looking forward to your responses.

Magic

pete
16th October 2013, 14:30
Hi Magic,

I think you summed it up nicely towards the end of your post, I hope you don't take this the wrong way ,but sometimes just doing nothing is fine ,and if Peter wants to watch TV, Read a book or just sit there looking out of a window , and saying nothing at all is fine ,we find ourselves doing diverse things now and I don't mind being alone ,the other half goes shopping or with the daughter , so the need for you to be stressed all the time trying to find things to do and make life as involved as you can , as I said this was no way intended to offend you, you know what you both like doing ,just this disease seems to make even the simplest of things almost impossible , I do hope you manage to get some time for yourself , you have certainly earned it .

Pete

magic
16th October 2013, 14:55
Well spotted Pete. Wanted reassurance as well as ideas. It is difficult because Peter finds it so difficult to express his feelings.

Magic

ccinjersey
16th October 2013, 15:50
Hi Magic

We call it the winter blues here, when it’s really to cold to be outside, and most seasonal events have closed down, and people tend to hibernate inside for the winter. Agree with Pete though, down time can be wonderful, relaxing and peaceful, and often much needed.

A warm fire and the presence of my family is usually enough for me :) My magic cure all is always a new puppy! Makes everyone happy !! LOL that is if you don’t mind the training and the walks outside in the cold! Their love and companionship makes it all worth it to me.

Hope you get to relax and enjoy another beautiful season :)

CCxxx

Terry
16th October 2013, 15:50
Just get Pete out Magic;

Take him to the weekly shop or in town, all us men love that, I think not!

i think that the change of environment is good and just get outside on the good days. If you have any museums or similar they might be of interest. The sun on the face is a great thing.

Terry

roy
16th October 2013, 17:24
Hi Terry

Good to see you're supporting movember. Sporting a tash,I think I shall follow suit besides it will give
Me something to do,Magic there are Huge selections of films oń love film or Netflix for a fiver a month
and both free for first month.

gerald
16th October 2013, 20:38
Hi Magic. reading your post and it has brought it home to me that we are in similar position but we are not quite as advanced as you I rack my brains trying to find things to stimulate my wife Christine but it seems she will do wants suits her. I think as you say we carers seem to beat ourselves up trying to be normal not easy. We have a lovely carer who helps by taking Christine for an ice cream (no cornet) though. at the moment little trips to garden centre cheers her up she meets similar people who talk to her which helps. Gerald

magic
17th October 2013, 08:27
Thanks for that Gerald. I think part of my problem is that I cannot face a winter with everyday a 'groundhog day'. It is difficult to leave Peter and engage in leisure. I am OK going to work as long as the support is behaving. He gains strength from the routines and the familiar language and people. I crave a bit of fun and excitement. I feel trapped but would not have it any other way.
Magic

gerald
17th October 2013, 20:00
Hi magic. everything you say I identify with it is very important not just for Peter but also for you. I believe you must find time for yourself take today for me our carer came and took Christine to next town they enjoyed a coffee no food allowed alas then went round charity shops no doubt eyeing things up for later they returned apparently full of fun. yes she had a short sleep. to recover. As for me I had a game of golf knowing everything was ok we both benefit from a bit a space and I relaxed. golf awful LOL but who cares

mrs m
18th October 2013, 00:05
hi magic, totally agree with gerald's view regarding time out for yourself, you need to do it to preserve your own sanity. Mr M is unable to use any limbs now and has a peg fitted (although he is still able to eat most foods) and uses a ventilator mainly at night. I have carers in a few mornings a week and help daily putting him to bed at night. On a wednesday, mr m attends the local hospice day therapy for a 5 hours. Although im grateful for those hours he is able to spend at the hospice, i make sure that i plan for him to have carers in to give me a break, generally for a few hours a week, depending on where i want to go etc. The biggest hurdle i have had to overcome is the feeling of guilt at not wanting to spend 24 hours a day with him. This is no reflection on mr m's personality, its solely to do with living with someone with mnd! I made the decision last year not to continue working (i was a midwife), simply because i couldnt carry on with such a stressful job and combining it with caring for mr m. I dont regret my decision, but like yourself, most days feel like groundhog day and sometimes i just want to scream - generally at the unfairness of it all - but if i did, i wouldnt want to stop !! keep your chin up, dont be so hard on yourself and try and take an hour at a time.
take care
mrs m

magic
18th October 2013, 07:04
Thanks for support folks. Peter has CHC and we have two and a half hours of carer time each day. Often cancel the pm hour if we are going out or want the house to ourselves. A carer visits him on a Tuesday afternoon and takes him out but I am at work then. MrsM, I have thought of giving up the part time teaching job but, when I am absorbed in my job, is the only time I am not focusing on Peter. We have the adaptations complete, the services are in place, even if I find they take some handling, friends and family (all family at least 100 miles away) are supportive and Peter is very mild mannered with sense of humour as wicked as ever. The reality is that, even with everything in place, Caring for someone with MND, is a very heavy toll, even if it does bring unexpected positives.
It is now six and a half years since he was diagnosed with brain tumour and four years since brain surgery. A bit of 'battle fatigue' is bound to kick in and, as you all say, I will have to develop some time for myself.
Hope this is my last rant. Thank you all for being there.

Magic

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