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Day 3 And struggling - Carers UK Forum

Day 3 And struggling

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Hello all,
My first post. My mother had a brain haemorrhage last year and was in hospital for 6 months. She came out last Thursday. It has been a very stressful time with 4 brain operations plus the fact the neuro hospital was a 200 mile round trip. but she has improved and The plan is she lives in her own house with 3 carer visits a day with me popping in and out. I have my own health issues - lifetime of illness -over 30 ops for Bowel and gynae problems - I was medically retired from my job i loved last year, a few weeks before my mother's brain haemorrhage. it was a very bad time for me what with losing my job and then this. The haemorrhage has left her with many problems both physical and cognitive. Whilst in hospital she would come out for weekend leave and come to my house. It was ok but not great - I have been married for a long time to a man set in is ways - our house is small with one toilet. I have my doubts she is well enough to live alone but we need to try as she is only 73 and is expected to improve . The carers I find come at erratic times and so I am never sure if they are there or not. Yesterday for example the morning carer did not turn up - I went down by chance to find my mother trying to make cuppa - coffee and sugar all over floor and kettle boiling furiously. Luckily I arrived in time before an accident. I am on edge all the time and cannot relax. I am spending my life on the road back and fore ( i live about a mile away) I know it's early days but I feel guilty and resentful that at last I am free from work so I can look after myself and have a life and now this. I then feel very very selfish . I have a sister but she has young children and isn't as intense as me- she can leave her for hours and not worry. My mother has sisters but they are nearer my age and all work so no help there.
Reading some of your posts I realise i should not be moaning. As well as medical issues I suffer from depression and have done for years - I drag my mother down as she responds so much better to happy positive people. That said I am closer to her now than I have ever been. Sorry to moan - just wanted a rant x
welcome to the forum.
We all need to have a rant sometimes(((((((hugs))))))),it sounds as though you need them!
Would it be possible for your mother to get one of these coffee machines that have little "pods" to go in them.I have no idea how they work,but they use them at my hairdressers for any clients who want a cuppa,and they look very safe to use.(I would probably be a danger to myself if I was your mother,as I would hate to go without my cup of tea in the early morning!)
Do you get any time to yourself?I know your sister has young children,but perhaps she could give you a break sometimes.It is very hard to do everything yourself.
Good luck.x
My dad had a massive brain bleed in 2003 and he is still with us, he doesn't live alone, he lives with my Mum who has the onset of vascular dementia. I go everyday (gave up my job to help look after him) but we have increased our care plan from two care calls to four a day. You have to be on the ball with the care agency and make it clear you wish to work as a team rather than it become us and them. The ladies we have coming in come at 8 30 to get him up and ready for the day, they come at 1 to check if he needs the loo again at 4 30 for the same reason and at 8 at night to get him into bed. I guess what I'm trying to say is life is very difficult in the strange circumstances you now find yourself in but it does get better, we have good days and bad days but overall we have to try and cope. Our problem here is Mum dislikes the interference of the carers, but over the years they have become used to this and tend to tolerate her rants with compassion rather than anger. I guess we're lucky to a certain extent because these ladies have been coming 10 years know - Things will be very hard for you at first but as time passes you become more used to the change in lifestyle that these added problems bring for you. I too am married and also have to respect my husband needs a wife as well as my Mum & Dad needing a daughter and carer, very difficult ball juggling games at times - best of luck and I wish you all the best xxxxxxx
Hello and welcome Image
Hi and welcome
Hi lauraine, and welcome. You can rant away here as much as you like, will do you good. Has your Mum got one of those red panic buttons that operate through the telephone and can wear round her neck? That may give you some peace of mind Image
Love Phoebe x
Thank you for your replies.
I think the problem is I'm not sure she should be on her own and it's just me finding the confidence to leave her for periods of time. As she has some cognitive damage routine things like using the remote control or the phone even are currently a problem. She does have one of those pod coffee machines but wouldn't be able to manage at the moment. I am going to get one of those 'one cup' things tomorrow but again ATM she would not manage. The area of the brain damaged affects coordination so she is shaky and unstable at times. She does have Careline but I worry that she wouldn't call them. I don't know - I am very good at worrying myself into a frenzy. She lives about half mile Away and at the moment I sleep there. So carers come 830 to 930, I go down about 11, carers 1 to 2, my sister will take boys after school and then carers again. So she is having lots of visits but it just doesn't seem enough. I know it is very very early days but I didn't think I would feel like this. One minute I'm resenting this responsibility then hating myself for being selfish then worrying that she is on her own . We did consider converting our garage to like a granny flat but we decided against as we thought no one would visit her as we live a but out of town plus we would have carers etc back and fore all the time and me and my husband ad quite private people. Now I am not sure we have done the right thing in letting her go back home. It's horrible and I am my worst enemy at times. I am waiting major surgery myself so it's all A big mess. But I do tend to be negative and I know I should start dwelling on the positives.
Thanks again for allowing me to unload. My husband is very black and white about things but he is actually very good with her as he is a cheerful chap which is what she needs.
Anyway thanks again
Have good evening.
Larraine, I too worry myself into a frenzy, and drive myself mad with so many "ifs and buts" that I don't know which way is up Image Image
One thing, i find that helps, is to sit down and write out pros and cons, and what specifically are you worried about, and possible solutions. Once it is down in black and white, it can become clearer.
Phoebe x
Hi ,
What my mum had when she was more active was something under the heading of 'Assistive Technology'. This consisted of a variety of gadgets to keep her safe while pottering about.
We didn't need everything but along with a buzzer round her neck was a waist one that gets put on and it's fine while she stays sitting up or standing but if it detected she was lying down it would automatically call the helpline over the phone.

The unit in the living room responds if the neck buzzer or waist device is activated and then someone comes on the machine talking out loud in the room asking my mum by name if everything is ok and mum can respond from her chair, she doesn't have to pick anything up to answer them.

If she didn't respond they would then make their message louder in case she was out of earshot. They would shout and ask if she was ok.

Then they would phone the number of the person they had been given who is either a relative or a neighbour.
If they get no response from the relative or neighbour they then send someone round from their own team.

We also had (under the Assistive Technology help) a key safe on the outside wall that only certain people knew so that they could let themselves in to check all was well.

We have been encouraged to press the buzzers to ensure that they are working and they expect them to be pressed by accident so there is no problem when that happens and they come out to test and change the batteries etc.

Another thing I am considering purchasing myself is an IP camera that will be set up in the living room and then if I am out I will be able to monitor her on my ipad or iphone.
This may give you peace of mind if you were able to watch her while away from her.

Hi phoebe and scruffy
Thanks for your responses. I think phoebe I worry too much and look to closely at everything that may go wrong so in this situation it is not helpful. I need to be positive and realise it is early days and she should improve and I am not alone. I suffer from depression and haven own health issues so it is not always easy to be positive. My 'retirement' was not meant to be like this. Selfish I know. After a lifetime of illness though and struggling to work I wanted to relax now and have some me time. But I also remind myself that I have been unwell for almost 30 years and who was it that looked after me any my daughter - my parents. Im not a selfish person infact I always come at the bottom of the pile but in this situation my attitude is different - probably because I can see how it can take over your life.
Scruffy - yes we have these gadgets too.she has careline and a bed sensor so if she gets up at night and does not return within a certain amount of time it will alert someone. I too have just ordered a camera-my husband can fit it and I think it will give me peace of mind. There is only so much we can do . My mother does not like the idea of carers and says she will cancel them which make a me mad inside. She thinks she can cope but she cannot at least not at the moment.
Thanks for your replies. It helps to discuss with people who understand.
Night all xx