Am I doing the wrong thing???

Phew thank you MM - our situations do seem very similar. Thank you for sharing your experience and I'm deeply sorry to hear the passing of your Mum.

I know I have done everything I can until now and I know that Mum is grateful for bringing her back to the UK and looking after her.

Mum's MND is aggressive too - she has been here for 8 weeks, when I bought her back we managed together with assistance on the flight, she could use the stairlift and walk (aided) to the bathroom, sleep in a normal bed etc, but now, we are having to use a hoist, I have moved her into my dining room with e profiling bed and her speech is getting worse - she is still able to eat but not as much as she was, we are waiting for the PEG referral to come through. It is all happening rather quickly!

Hi TT, it can feel massively overwhelming. The way I coped was not to think about it and just do it. Not ideal but it did work for me. There is a video on the MDA YouTube channel where someone says "you can never keep ahead of MND" (I'm paraphrasing). It really does feel like that. The only thing I regret (and there isn't much) is that I should've spent more time talking with her. We both thought we had more time - so much so she didn't even do her will until 2 days before she died (we can do it all in January, I'm sick of people being in the house - she kept saying to me).

One piece of advice I would give is breathe. My PT showed me that everyone's brains literally stop and only focuses on breathing when you force yourself to do it. When you do this your brain literally switches off and calms you do. I did a lot of this actually with my mum. Also - hug your mum as much as you can

Phew thank you MM - our situations do seem very similar. Thank you for sharing your experience and I'm deeply sorry to hear the passing of your Mum.

I know I have done everything I can until now and I know that Mum is grateful for bringing her back to the UK and looking after her.

Mum's MND is aggressive too - she has been here for 8 weeks, when I bought her back we managed together with assistance on the flight, she could use the stairlift and walk (aided) to the bathroom, sleep in a normal bed etc, but now, we are having to use a hoist, I have moved her into my dining room with e profiling bed and her speech is getting worse - she is still able to eat but not as much as she was, we are waiting for the PEG referral to come through. It is all happening rather quickly!

Thank you Barry - your message has made me feel a little better. My situation is unique as I bought Mum back from Spain to get better care in the UK which meant she had to live with me, then my stepdad moved in obviously and the dog. So it is all very cramped and my stepdad and I clash which is not ideal either. But once Mum moved into her new home and I go back to work then see Mum in the evenings after work I will feel that my life will have a bit of normality again

Hi Twinkle Toes
I've recently been through something similar with my mum (she unfortunately passed away a month ago today). I felt every anxious about becoming a "carer" even in a small capacity. When it came down to it we were able to get carers from the community to do the "heavy lifting" (bathing/toileting) however I was still the primary carer for everything else. We discussed it very openly between each other and my mum even commenting multiple times saying she was a burden. I won't lie, it was hard...very hard. Throughout it all I continued work (running a business) but everything else stopped. So social events/friends etc all came to a halt.

I won't say "you need to do xyz" as everyone is different and every experience is different. If I had to do it again I wouldn't change a thing as unfortunately my mum died very quickly (MND was extremely aggressive with her). The only advice I would give is be open and discuss it openly (if you can).

I hope that helps
MM

[Barry52]

Hi TT,

Whilst you have your mum’s best interest in your heart you must also consider your own life. It may sound harsh to say but your career is important and will be so long after your mum has gone. I’m sorry to be so brutal but we all have a limited time and some of us less so.

We recently had to make a decision about my wife’s mother who has dementia. She couldn’t realistically live with us given my health so she went into a care home which is better suited to managing the patient.
My own mother is very frail and I have recently set up a care plan in her own house so that she gets regular meals. It is a tough decision to make but often the only choice and you must not feel guilty about it.

I can understand your mum’s reaction to your suggestions as I too get frustrated when my nearest and dearest make decisions on my behalf. Please don’t think I am being uncaring as I’m just trying to offer a balanced view that is not always about the person with MND.

Best wishes,
Barry

[Kayleigh]

Hello Twinkle Toes,

Thank you for your very kind comments about me.

When I joined this forum in November, I felt rather isolated and low due to this diagnosis. However, I always find strength and inspiration from the wonderful people who regularly contribute here. The support I get from this forum family is a great blessing, as it keeps me going and helps me to stay positive about things.

I do feel for you and your mum. You are very kind to share your thoughts with us. I expect that there are many other families going through what you and your mum are going through right now. It's good that we reach out to each other with our experiences, support and advice, especially during tough times and when there are difficult decisions to be made.

I really do hope that things work out well for your mum with the provision of her care. Hopefully, if she does move into the Nursing Home, she will soon become settled and happy there. It is good to hear that she will have daily visits from her family and hopefully she will make some good friends there too.

Best wishes to you and your mum,

Kayleigh x

Thank you Kayleigh - I do really appreciate your comments. Mum is really advanced - we had our first appointment with the UK Neurologist a couple of weeks ago and he confirmed that Mum has had ALS for at least 18 months. Having a carer live in would not work, my house just isn't big enough and plus we would feel happier with 24/7 nurses at the nursing home and also they have palliative care there, so she wouldn't have to move to a hospice when that time sadly comes.

I have to say Kayleigh you seem so positive and you respond to the majority of the messages on here - you are amazing!

[Kayleigh]

Hello Twinkle Toes,

I am sorry to hear about the decline in your mum's health. Understandably, it must be a particularly upsetting and difficult time for your mum, you and all your family.

I am not a carer, but can fully understand why you are considering the option of your mum being looked after in a Nursing Home. I imagine that the only other option would be to employ carers to look after your mum at your home - would this be a practical/possible option for you to consider as well? If your mum hasn't visited the Nursing Home yet, would she consider going to there to have a look round and meet some of the residents and staff? She could possibly decide that the Nursing Home would be ok for her, but this might be something she would need time to think about and consider.

In future, if I need to be looked after in a Nursing Home rather than at home, it would reassure me if I had been consulted about all the options available for my care, and also I would find comfort in knowing that I would get regular visits from my family. It sounds like you have your mum's best interests at heart and that you want her to receive the best possible care, and so please do not think that you are being selfish by looking into all the options available.

This progression of the disease is not easy for anyone to deal with or come to terms with. Sometimes it takes a little bit of time to get our heads round any new changes in our lives. Even if we realise that adjustments regarding our care need to be made, it can still be a shock and not very easy to accept when we are first told about them. We often get used to a certain routine and can sometimes feel very unsettled by any changes made to the provision of our care.

There is probably a lot for your mum to come to terms with at the moment, realising that her healthcare needs are increasing and that you can't work from home for much longer - but hopefully she will be re-assured that you always have her very best interests at heart, concerning her healthcare and also her quality of life.

Hopefully, a solution for the provision of your mum's care can be found that your mum, you, and everyone in your family are comfortable with.

Love and best wishes,
Kayleigh x

Hi fellow carers.

So Mum is deteriorating quite quickly, in the past couple of weeks we now have a profiling bed downstairs, mobile hoist, catheter fitted and we (my stepfather and I) can no longer transfer mum to and from chair/commode to open her bowels on our own, so this means I cannot go to work in the office, and only work from home, I have a great employer and they have been understanding over the past 10 weeks since I bought Mum back from Spain to live with me but I now need to get back into the office and feel confident that I can leave Mum in capable hands. I have been looking at Nursing Home and we discussed it this morning and she was very upset but I think she understands why we are looking at this option. The home is very well run and they have a fellow MND sufferer living there. There is 24/7 nurse care which would be a huge relief knowing that Mum has professionals on hand to help her when needed. My stepfather and dog would be with her there during the day and I would go and see her after work.


Selfishly, I want to be a daughter to my Mum and not a carer, we are arguing a bit as she gets frustrated with me if I don't do something the way she wants it done etc, and I don't have my house to myself and the only room I can escape to is my bedroom....in my own house- is that bad?? Has anyone else been in this position where the only option is to put their loved one/parent etc into a Nursing Home?

I love my Mum dearly - she is my best friend and we always had so many laughs - it is just all so heartbreaking.

I would love to hear your thoughts?