Help! Severe symptoms and clueless.

Caring for someone with MS
1

Hi All,

I’m new to this forum (and forums in general!)

Mum is early 60’s diagnosed for over 20 years now. She recently moved to an Extra Care home with carers who make 4-5 calls per day and a welfare supporter who does mums shopping sorts paperwork etc, she also has an appointee to manage her benefits and finances.

I don’t know much about the types of MS, but the symptoms she has now are the worst they have ever been, She struggles with he speech, finds it hard to control movement with her hands, is doubly incontinent and suffers greatly with her bowels (3 x ambulance visits in the last 6 weeks). She cannot walk (Uses a powered wheelchair). She is high risk for choking and has a mashable food diet. She has tremors and her vision is failing. She also has issues with her memory. She must be hoisted on and off her chair.

She also lives 200 miles away from her family.

My sister lived with her until she moved to the extra care home. This is the first time she has lived alone all her life - its been about 3 months now.

She has a landline phone, and she can call me as I am on speed dial. We call each other every day and chat for 20-30 minutes.

She is increasingly getting more and more distraught about being on her own. She sobs on the phone either because she is on her own, or because she has pain in her bowels. The vast majority of these chats are negative in some way.

Because her memory is so poor, she asks the same things all the time. I am always patient and gently steer the conversation to things she does remember and can usually end the conversation on a positive note. The last 2 days however have been awful, she is still sobbing when she puts the phone down. I feel so powerless to help, I’m distraught myself, and I’m starting to dread the phone ringing.

We are in the early stages of applying for mum to move closer to her children, which the social worker has encouraged as she feels mums social needs will be better met when she’s closer to all of us, although so far this task seems insurmountable and I am met with hurdles at every turn.

I’m not sure what I’m asking for really on this thread!?!..

Can anyone help with helping me to help mum with her low mood. Can it be addressed? Is it significant to MS?? It is terrible to her her crying all day everyday on the phone. Who do I go to to support mum with this?

There are tons more questions, Sorry!!

thanks in advance for reading, sorry it’s been a long post!

SG x

2

i would speak to the manager of the care home, explaining how upset your mum is and asking if there is anything they can offer her.

apart from this i am completely stumped for any other suggestions.

good luck with your effort to have her moved closer to you.

try writing to your mp to see what help s/he can offer.

write to relevant charities, ms society, age concern and the like.

i’m feeling upset and angry on your behalf.

look after yourself too.

3

Hello Snowgirl

Do you (or your sister or anyone) have a Power if Attorney for your mother? You’ve said she has an appointee for benefits and finance, but if you had a POA, you could speak to Social Services on her behalf and possibly arrange for the benefit of her health and wellbeing to have her moved.

Without a POA, there’s no way you’d be able to speak to anyone on her behalf. See Make, register or end a lasting power of attorney: Overview - GOV.UK for information on how to get POA. Note that there are two types of POA, you can get one or both. One covers health and welfare, the other property and finance. You’d probably need both to get things sorted.

I imagine you’d end up having to do quite a lot in order to have your mother moved. You need to speak to the management of the Extra Care home where she is currently and Social Services both where she is now and your local councils Social Services department. You’d also need to find the most appropriate home for her.

I’m sure you’d feel happier knowing you could just call in on her for 20 minutes at a time more frequently. And she wouldn’t be so lonely, so might be a bit happier and less frightened.

I do wish you and your family the best of luck with this.

Sue

4

Hello

Its really upsetting to read how distraught your Mum and you are becoming in this situation. Just a small suggestion that might help in the interim - telephone calls are good, but would the care home set up a regular Skype call for you and your Mum to chat…so that she can literally see you as well as hear you? I know it is not as good as being there with her and being able to physically hold her hand etc, but actually seeing your face may be of more benefit?

I wish you all the best in working towards getting her moved closer to you and her family. Do update progress, it would be good to hear how you are getting on.