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Mum's MS and Christmas

Hi everyone,

This may seem a strange post but im looking for some advice from anyone who may have been/currently be in a similar boat.

My mum was diagnosed with MS seven years ago when I was 16. From that point she left work and began a very rapid decline in health. Like many of the posts I’ve read, my life from then on was shrouded in constant uncertainty, hospital visits, anxiety and what I can only describe as seeing my mum’s mind and body at war with her. It was horrendous to lose her physical and mental ability bit by bit and to live life constantly worried that each phone call might be from your frantic dad as he made his way in yet another ambulance with mum.

Five years after she was diagnosed, and following the constant strain of caring for her, my mum moved into care. At this point she had had a huge relapse (which do doctors has thought was a stroke) and cognitively, she was in a bad way. I can honestly say that to date, her moving ino a care home was one of the most heartbreaking times I’ve been through.

I’m going off on a slight tangent to what I’d originally set out to ask, which is, with Christmas coming I am yet again struggling to come up with gift ideas. Reason being this:

  • she is so immobile and fatigued that any excursion (theatre trip etc) is completely out of the question
  • her memory and concentration span is so poor that DVDs or CDs etc would be pointless
  • she is peg fed so alcohol or chocolates aren’t an option
  • her arms spasm and she scratches a lot so jewellery could be dangerous
  • her bedroom has literally no space left for ornaments or decorations
  • her skin is sensitive to body lotions and creams

Our Christmases are spent rather unconventionally at the nursing home and although she barely knows that it’s Christmas day, we still try to make the most of things and spend our time together as a family. I guess we just try to make the best out of a bad situation.

So anyway, I’m outta ideas… Suggestions welcome!

Thanks xx

What a sad story..for you, your mum and the rest of your family.

I  wonder if this could be a useful suggestion.....is mum able to have her hair done...and her nails.......you could arrange for a mobile stylist to visit her..a lot of homes already have this service avaialble.

or..........

 

what about some pretty nighties, or a bed jacket?

Whatever you decide on, I hope mum enjoys whatever you give her....she`s lucky to have such a thoughtful daughter.

Happy Christmas.

luv Pollx

Hi,

I'm wondering whether you're correct to assume music would be "pointless", because don't they play music even to people in a coma, because they may still have the capacity to recognise and be stimulated by it?

And by coincidence, I just read this BBC article, that suggests someone's musical memory can still be intact, even when their general memory is profoundly impaired:

http://www.bbc.co.uk/news/magazine-15791973

Of course, I suppose a lot depends on whether your Mum was much into music when her health was a lot better.  If she was never particularly interested, I suppose she still wouldn't be now.  But if she used to really love it, it may still be a positive experience for her, even if she cannot outwardly show that she's listening or enjoying it.  And would it really matter if she couldn't rememember afterwards that she had heard it?  If she enjoyed it "in the moment", isn't that still something?

Other than that, I can only really suggest things to try to make her environment nicer.  Is there a spare electrical socket in the room, and are you allowed to plug things into it?  My mum bought me an electric fragrance diffuser (not because I have MS - although I do - but they're nice for anyone).  They are OK to run overnight, because they're very quiet, and don't use any heat source.  You place a few drops of fragrance oil onto a gauze, and a gentle fan disperses it into the room.  Mum actually bought it at a hospice, so it was sold with seriously ill people in mind.

The only issue I have with it is that if you would like to use more than one different fragrance in it, you'd be well advised to buy some spare filters/gauzes, because fragrance oils are very potent, and once you've applied one to the gauze, it will tend to linger forever, even when you want to replace it with another!  So better to have a separate gauze for each fragrance you intend to use.  I suspect the gauzes might be washable, with care, which would be another way round it, although I've never actually tried, just in case they fell to bits.

Tina

x

 

 

I wonder if mum likes animals.There is a group called Pets as Therapies who take their dogs to people like your mum.If you read their website it explains much better than I can.

I know it's unlikely that they would visit Christmas day but somewhere around that time? Even if it doesn't work at christmas it might be something worth considering for another time.

I agree with Anitra too musicis very theraputic and can be interpreted by many who appear not to be aware.

 

Your are lovely people to still care so much and give  Christmas time to your mum.

 

Terry 

How about some very special bed linen? Or a collection of special memories collated in some kind of album? Hope you find the perfect solution anyway, all the best,

j

 ....'.Anonymous', first of all, you're a wonderful person because this situation must break your heart. I have SPMS myself but, by the sound of it, I am nowhere near the state of your mum (which is PPMS?).

My wife is a music therapist and has some wonderful 'results' (let's say she makes people smile in bad/ sad health circumstances ) purely by playing music (piano, guitar, singing).

Maybe a music therapy session is an idea? And what about playing a CD (or whatever) containing classical music?

All the best with your search.

        Your mum is very lucky to have such a caring family who is trying hard to understand what she needs to

        stimulate her. I have only just been diagnosed with relapsing/remitting MS so I am no where near as bad

       but I agree that if she liked music before I'm sure she would love to listen to the music she knows. I wish you

       and your mum the very best christmas.

      

 

OK... Anonymous one and two (Izze), how are you both doing? Do not worry, I am genuinely interested for the right reasons..... Respond if you feel for it.

Hi
Sorry for the delay in replying. Izze, I bought my mum a musical on DVD as anitra and josfromglos were right, for some strange reason she still remembers music (and even mouths along to songs on the radio still!). I also got her some plants for her room (which annoyingly ended up irritating her chest and we had to take them home!) and a nice shawl which she could use to drape over her shoulders in the chair or in bed. How did Christmas go for you and your mum? What did you buy her?

I know it’s late but thanks to everyone who made suggestions, you all really helped and gave me food for thought. And although my mum was tired on Christmas day, she wasn’t as bad as she could have been.

Thanks everyone xx