Mum with MND

[Guest]

Hi All,
After progressing through all the usual tests from around April last year my 82 year old mother was diagnosed with MND before Christmas. Info and any tips and short cuts most welcome. Thanks. x

[Terry]

Hi Tina and welcome to the forum,

Sorry to hear about your mum and her problems.

You will never replace speech totally but there are various apps and machines that can talk for you. I have been using them for over five years. Hopefully she has a team around her and one of them will be a SLT speech and language therapist, they should help sort out some speaking symptom. You can try and do some things yourself if you have a tablet computer.

When you say that it is progressing fast, when and what were her first symptoms?

How are things now?

Best wishes Terry

[Kayleigh]

Hello Tania and welcome to the forum.

I am sorry to hear of your mum's diagnosis. You will find a lot of support from the friendly folk on this forum.

I can understand why you feel a bit isolated - there is a lot to come to terms with and it can all seem a bit daunting. I used to feel like that, but since joining this forum any feelings of isolation have subsided. There is also a lot of support, advice and information at local MNDA group meetings, usually held every month. Also, I have had a lot of friendly support and advice from my Regional Care Development Adviser (RCDA). Links to details of local MNDA groups/branches and the RCDA's can be found below:-

http://https://www.mndassociation.org/getting-support/local-support/branches/

https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

There are various 'medical professionals' who your mum should get support and help from (free of charge) e.g. an MND specialist nurse, dietitian, speech and language therapist, physiotherapist and occupational therapist. I have realised from reading various posts on this forum that, unfortunately, it can be a bit of a 'postcode lottery' about what support is provided, and not everyone diagnosed with MND is supported by all of these professionals. It can also take some time from being diagnosed to when the support starts. If you haven't done so already, I would recommend that you contact your local Regional Care Development Adviser because that person will know what support is available where your mum lives, and may be able to access the support more quickly for her.

You mentioned that your mum's swallowing and speech are effected. I have provided some advice/info below, which you may not already be aware of, and that you might find helpful.

- As already mentioned by Terry, your mum should be seen by a speech and language therapist, who will be able to assess her and advise about suitable communication aids. In the meantime, there is a link to info about the MNDA's 'communication aids service', below:-

http://https://www.mndassociation.org/getting-support/communication-aids-service/

- Hopefully, your mum will be seen by a dietitian to get advice about nutrition and food that is easier for her to swallow. There are nutrition drinks such as Fortsip and Complan - your mum's GP might prescribe these if she is finding it difficult to consume enough food/drink to get the calories and vitamins/minerals that she needs. Below is a link to the MNDA's info about 'swallowing, eating and drinking' (it also includes info about feeding tubes):-

https://www.mndassociation.org/about-mnd/living-with-mnd/eating-and-drinking/

If not already done so, and depending on what needs she has, your mum might want to ask for a 'needs assessment' from her local council - there are NHS guidelines about this, and I have posted a link to these below:-

http://https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

Best wishes to you and your mum,
Kayleigh x

[Ellie]

Hi Tania and welcome.

Sorry you've had to join the Forum, hopefully we can make you feel less isolated.

The first service your mum should see is a Speech and Language Therapist (SLT) who'll assess her swallow and speech and advise on how to safely eat and drink and if your mum should have a feeding tube, if she wants one.

The SLT also will advise on, and "should provide" communication aids. If your mum is OK with tech, there are text-to-speech apps, if not, there are communication boards or a Lightwriter.

Does she attend an MND Clinic? She should get help there. You may have to chase (and chase and chase ) for an SLT appointment.

Hospices are great resources and maybe mum could attend Day Hospice to give you a few hours off per week?

Love Ellie.

[shrew]

welcome Tania, people will help and advise you on here

[Guest]

Thank you all for your advice. Mum presented with foot problems around March/April 2018. She was very independent and active in the garden and with a couple of local social groups prior to this but she has not left the house aside for hospital appointments since about June/July and now struggles to get about the house using mobility aids. She has found being taken to hospital appointments and even spending time talking to friends exhausting so she could not attend MND meetings or a hospice. She has seen all the relevant teams but help has been very slow and aggravated by the Christmas period so much so that I just had to start getting things done myself. She has seen Speech and Language but they have not offered any solutions, we have a text to speech app on an Ipad which mum has not tackled yet but as I am at a distance it is getting increasingly difficult to understand her over the phone. She is trying to eat well and has Complan and is not a big person but is already under 7st. I am looking into how best to apply for Continuing Care as I understand this is a minefield!

[Ellie]

Hi Tania,

Her weight loss will cause knock on problems and may hasten her progression, especially at her age - sorry Tania, it must be so hard trying to deal with this from afar..

She can have nutritionally complete drinks (Fortisip, Ensure) prescribed for her.

That her SLT offered no help or advice is disgraceful...

Hopefully the carer will work out and give you proper feedback.

Best wishes,

Love Ellie.

[Terry]

Hi Tina;

I think that you should try and get your mum to visit the hospice. They understand a bit about Mnd and will help her . They are also a probably a lot better at assessing and getting things and people to help her.

Love Terry

[Barry52]

Hi Tania,

You said your mum has an iPad. Can she use messenger or Skype because when my family call me they can understand me better if they can see me?

Best wishes,
Barry

[shrew]

hi Tania what about an Alexa so u can drop in on ur Mum?

[Kayleigh]

Hi Tania,

I understand that Continuing Health Care (CHC) might not be particularly easy to get, but you may wish to look into it now so that you are aware of what it involves, in case your mum wants to apply for it now or in the future. As you are probably aware, CHC is fully funded by the NHS. (I have provided a link to the NHS guidelines about CHC, at the end of this post.)

Your mum might have already had a needs assessment for care provided by her council, but just in case you are not already aware of this assessment, here is some further information about it: - your mum might be entitled to receive care at home organised via her local council (funding for this care is means-tested, and so the costs of this care might not be fully met by your mum's local council). If you wish her to be assessed for this care, you would need to contact adult social services at her local council, and ask for 'a needs assessment for care'. The council's website may include the facility to make an online request for an assessment.

Link to the NHS guidelines concerning CHC:-

http://https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Best wishes
Kayleigh

[Guest]

Hi again, Thanks for your kind words. I think you're right Ellie, her MND does seem to be progressing rapidly and I think this is partly down to not having enough nutrition - I thought I would have several months, not several weeks to work out what would be needed. My husband and I spent Christmas day with her and she had limited mobility but was coping, 10 days later her right arm was weakening and then I discovered she had accidentally wet the bed, so I arranged a carer who started today (21st Jan 1 hr a day) and began converting a downstairs room and bathroom for her and then the last couple of days she has had further toilet problems and because she is living alone, not even a month later, I am wondering if I am doing the right thing trying to allow her to stay at home or if I should be looking at a care home. I can of course arrange more visits from the carers per day and am hoping for some guidance from them, but does anyone know how practical it is to have someone cared for in their own home as opposed to a care home? I feel that putting her in a home too soon will signal the end of life for her, but remaining at home she can still have some independence, but I don't want her to be uncomfortable, distressed or in danger - so difficult to judge....

[Guest]

P.S. And thanks Kayleigh, I have gone some way into researching continuous care and will look at your information. We are looking at communication options as well thank you.

[Kayleigh]

Hi Tania,

It is lovely to hear from you again.

I can understand your dilemma about whether the best place for the provision of you mum's care is at her home or at a care home. I am not at the stage yet where I need to be looked after by carers coming into my home, but I realise that the situation is likely to change for me in future.

I know from reading posts on this forum, that it is often a workable and viable option to receive continuous healthcare at home, including for people who live alone. However, as everyone's needs and wishes about the provision of their care are different, you are doing the right thing by researching all the options available for your mum.

A great way to get advice about the provision of your mum's care at home etc is by contacting her local hospice. As well as nurses, hospices often have their own physiotherapists and occupational therapists etc. In my experience, the people there are really helpful in giving advice and they are passionate about wanting to improve the quality of life for people diagnosed with serious illnesses, such as MND. You might also be able to get help/advice with the CHC application. As well as providing advice about the provision of your mum's care at home, they might also be able to advise about any care homes that might be suitable. If you haven't done so already, you may wish to consider contacting your mum's local hospice to ask what support they can offer you and your mum (some hospices have theIr own websites).

Best wishes,
Kayleigh x

[Ellie]

A care home or care in one's own home - it's such a hard decision Tania and there's no right or easy answer, unfortunately...

There are pros and cons to both scenarios and no doubt your mum will have her own views on the subject too.

Yes, people can be cared for successfully in their own homes but it is likely your mum will need 24/7 care in the future, so a team of trusted carers is needed. Your mum would obviously be in familiar surroundings and have that home environment. I think you're right to increase her hours of care now.

Medically, she'd need carers trained to give her meds and to deal with any equipment she may need as time goes on.

In a care home/nursing home, she'd have 24/7 care and company during the day.

(Assuming you find a good one) The care home option may be less stressful for you, as you wouldn't have to fret as much in the knowledge care is "on tap", so to speak. On the other hand, your mum may prefer to stay at home, but she may, with time, realise she needs structured care.

It also may come down to money!

I am sorry she has had some toilet accidents - many people on the forum do. If you've mobility issues and you gotta go, there is not a lot you can do.... Maybe Tena pants or similar?

Love Ellie.