Mum deteriorating fast, how can I help her?

[Amethystmoon]

Hi,

I took my mum too see her neurologist yesterday, and he thinks she has anterior horn cell disease... He wanted to admit her to hospital there and then for further diagnosis but lack off beds means she has to wait until today or tomorrow.

My mum has been slowly changing for the last 10 years, started with mobility issues with her ankles, then memory loss followed by twitching and shaking. But over the last 9 months she has got a lot worse.

Mobility is almost none, and falls often when she does move around her home.
Eating... Well she chokes on most food and is losing weight fast.
Drinking... Again chokes or can't even put too her lips too drink
My mum's gagging reflex is constantly making her bring up thick clear liquid...
Her muscles are visibly wasting and she has lost the use of one hand while the other is degrading fast.
Her face smiles and laughs uncontrollably, even when we got the diagnosis...
Her eye sight comes and goes, and the light hurts her eyes...
Her ability to lift her arms or walk has gone.
My mum's body is like a very old lady.... But she is only 58!

The doctor says there is no cure, but he can give medication to slow the damage.

My question is, having read about the condition... How can I help her?

 

[Amethystmoon]

I forgot to mention, her speech... So hard to understand her. Mum says it's like mouth full of cotton wool, and her tongue is all ripply like one of those slides at fair grounds with the bumps in.

 

[Atsugi]

Above all, ensure she does not fall.

I hope the NHS will provide her with a power wheelchair that she can control with a single joystick, but she might be too far progressed.

Unfortunately, a nursing home might be in order.

 

[SMP51]

only 58? how old are you? are you at home still, do you have help with mom's care?

 

[Amethystmoon]

Above all, ensure she does not fall.

I hope the NHS will provide her with a power wheelchair that she can control with a single joystick, but she might be too far progressed.

Unfortunately, a nursing home might be in order.

That is my fear... My mum moved into an over 55's building last year to make things easier on her, they have a great team there that help with dressing and showering ect, but the falls happen in her home... No room for wheelchair in there and once they have her diagnosis I'm wondering if they will let her stay?!

My mum sat and cried last night and begged to have her body back... It's so painful to watch and feel so helpless to do anything to stop it happening.

I will direct my mum here... Once she gets over the shock, as she thought going to the specialist would mean getting her life & body back, instead they gave her bad news.

I'm not sure how well she will cope with the knowledge... We have always had reversed roles in our relationship of mother & daughter, as mum has never been able to handle much responsibility or anything stressful in life.

 

[Amethystmoon]

only 58? how old are you? are you at home still, do you have help with mom's care?

I'm 39... No I'm not living with her and our house is not big enough or suitable to accommodate.

 

[lgelb]

Amethyst [lovely screen name, BTW],
She cannot stay in her building, in a unit that will not accommodate a wheelchair.
Since this news is one of loss, for now you might focus on the positive aspect that now you are both aware, that she will need a new place, and will receive more help, equipment such as a wheelchair and so have less risk of falls. And with an MND diagnosis, in the UK, this can happen. Getting the formalities sorted so all that can begin and researching housing options will only help her, and it sounds like she will need that help.
You are the best daughter for joining our group ahead of her, and we will support you all we can, as will, I'm sure, the organization in the UK for MND.

 

[Amethystmoon]

Thank you for your kind words, my mum went into hospital yesterday, They are running lots of tests on her to fully establish what is happening too her, mum has been told that the speech therapist and the dietician will be coming to help her. hopefully we can establish what her needs and requirements are, and go from there.

As for her living environment... I agree that a care home that is more appropriately equipped to cope would be better for her. we live in an area that has many, as its a retirement zone. once we know the full impact, then i will start enquiring.

Thank you to you all for your kind words and advice.

 

[Amethystmoon]

Just wanted to update,

Mum has had her tests and confirmed MND... Mum has agreed to have a feeding tube fitted, which should be happening mid week. They are putting a care plan together so that mum can stay where she is living for as long as she can. They are also doing breathing function test...

 

[Barbie]

wow so sorry for the confirmation. I believe that you will get good care for her in the UK, but you should still stay on top and help out with the planning. It is overwhelming and she sounds like she has a bit of emotional liability (in appropriate emotions caused by the ALS).

we will help in any way we can.

 

[Amethystmoon]

wow so sorry for the confirmation. I believe that you will get good care for her in the UK, but you should still stay on top and help out with the planning. It is overwhelming and she sounds like she has a bit of emotional liability (in appropriate emotions caused by the ALS).

we will help in any way we can.

Thank you...

Giving my mum the diagnosis was hard, but she is taking it at the moment better than expected. i believe she is feeling slightly relieved to have a diagnosis for all the systems that the GP could not understand.

Phoning my brother and sister, plus the rest of the family has been hard though. Trying to answer their questions as honestly as possible is painful. I still have to tell my children, not sure how much I'm willing to share with them as they are 9, 12 & 17...

 

[tinyandme]

Find ways to make her life as full and happy as possible. Invite friends over, surprise her with a date night, thoughtful gifts..whatever you can manage. Quality of life versus quantity.

 

[SMP51]

just be honest with the kids, and let them ask you questions. You want them hearing it from you, not the grapevine or searching for answers alone on the computer.
yes, telling loved ones is difficult.

 

[dalvin]

I'd suggest telling them all together, but it keep it simple, at the level the youngest can understand. Later, you can pull the oldest aside to give more detail as he/she can probably handle more detail. Again, let the kids lead the conversation. As much as possible, after the initial chat, talk to them separately. This way each one gets his or questions answered with out negatively impacting the others. Each ones minds will work differently and wag one is ready for the others may not be. This will also allow them to ask without feeling pressure from the others, ie, one saying to the other something about their question being dumb. Firm believer in the idea that the only dumb question is the one you don't ask, dumb because if you don't know the answer and don't ask, you'll never know the answer

 

[GilWest]

I'm 39... No I'm not living with her and our house is not big enough or suitable to accommodate.

DO NOT beat yourself up about this. I am in the same situation. Sure there will be those who will question why you are not letting your mom move in. Families can be torn to shambles over illnesses such as these. Do the best you can and enjoy your life. Your life, family, and career will continue after this, and they are important also.

If anyone gives you grief about they way you are handling things, kindly offer to sign them up for a shift helping out. People tend to back down, and it is funny to see the look they have.