Not Coping Well

[Broostine93]

Hi Guys,

The palliative team have tried all different kinds of chairs for her to try and none of them have been successful. I do believe they brought a brand new type of wheelchair/armchair thing for her to try and even that was painful after 5 minutes apparently.
We think that the nerve was damaged after a slip on some black ice a year and a half ago- the scans showed nothing, but it's been getting progressively more painful and caused her to have rapidly-progressing drop-foot ever since it happened.
The problem with nursing homes is that the staff have so many people to help that they cannot just get my Gran out of bed for a 5 minute trip around the home/in the garden, just to put her straight back into bed again- Gran seems to accept this and the nursing home staff have tried to get her out (though, I think that they believe she's putting on how much pain she's in- this is a woman that I've never heard complain about anything painful in my entire life, so I know that when she's in pain, it's a hell of a lot of pain indeed).
We had the riser/recliner at her house before she moved and she couldn't even sit in that for more than 20 minutes (and that was a month ago, so the pain has gotten worse by now, so I can see her point in wanting to just cut out the faffing and stay in bed, really).

It's distressing for me to see her in the bed all the time, but I don't think there's anything we can do. I just worry about if ever she needs to go to hospital for any appointments or to possibly have a PEG inserted- she won't last long en-route as she will have to go in a chair (the nursing home lifts aren't big enough to get the bed into, so she'd have no choice).

Doctors have been out to see her weekly since her move and none have prescribed any pain medication- she's on Riluzole, Baclofen and Quinine only.

Thank you both for your concern- it's really appreciated xx

[Ellie]

Hi Chrissie,

Thanks for the explanation.

I do think more could be done for your Gran, starting with pain meds, which could mean she's not confined to bed and allow her to interact with the other residents - she must be in a low mood.

Usually Gabapentin or Amitriptyline are prescribed for neuropathic/nerve pain and, if it's not working, a higher dose may be needed.

You may need to meet her Doctor or speak to the Nurse Manager and insist your Gran is properly looked after. The care home is taking the easy way out - of course your Gran doesn't want through go through the pain of sitting out, so that pain must be dealt with.

Sorry if I come across as harsh but your Gran has been diagnosed with a pretty awful disease and deserves the best quality of life possible in the time she has left. (That doesn't mean I think she hasn't much time left btw!!)

Love Ellie.

[Lynne K]

Thanks for your long explanation about your gran Chrissie.
It sounds like she's seen rubbish doctors not giving her pain killers. I'd complain if she was my relative. Good luck for your gran to get relief soon so that she can get around painlessly. Lynne

[Broostine93]

Hi Guys,

I passed on your (extremely helpful!) suggestions to my Gran, but she said she doesn't want any pain meds and she'd rather stay in her bed. It's her choice, I guess and at least now she knows that there's the option if she wants it.

She seems alright in herself and, funnily enough, she never ever complains about any aspect of the disease itself (she complains about there only being one carer on her floor during the night-time shift, but I can't do anything about that, unfortunately). The woman is a warrior (and, thankfully, once her chest infection cleared up, apparently her breathing has gone back to normal so we're out of the woods RE respiratory distress for now).

She was low in herself yesterday, but it was the 2nd anniversary of my mum's (her daughter's) passing and we also lost my dad's sister yesterday morning after a 10 year battle with secondary breast cancer, so emotions were running very high.

Thanks again, guys- your knowledge on how to cope/manage with all the things this disease throws at us is astounding

xx

[Lynne K]

Hi Chrissie, sorry about all of the stress that knocked your gran and maybe you down. Hopefully things will pick up in the near future. I don't know how or why your gran would want to stay in bed instead of getting the pain sorted and going outside or in the day room. Has she given up on life already? If so that's a real shame for all of her loved ones. But hey, it's her decision. I'm sending you electronic hugs, take care. Lynne

[Terry]

Hi Chrissie,

Good to hear that your Grans breathing has improved.

Love Terry

[Broostine93]

I don't know how or why your gran would want to stay in bed instead of getting the pain sorted and going outside or in the day room. Has she given up on life already?

Lynne, I don't know how many times I've asked myself that same question. I am exhausted trying to make life easier for her- even before her walking was completely gone, I was constantly looking for aids to help with the drop foot situation and to ease the nerve pain a little- every single thing I ordered for her was met with 'No, I don't like that' or 'No, I don't want it' or 'It's not worth the hassle'. Sometimes, I think she's cutting her nose off to spite her face as if to appear to everyone else like 'Look, I'm in this dire situation and not complaining about it- aren't I doing well?' Do you know what I mean?
Her personality is the most frustrating part of her having this awful disease- she's not receptive to any kind of help. When her speech goes, I have no idea what she's going to do because she won't even consider using any technology to be able to talk. I know there's picture cards and things, but you can't sit and visit someone for 1-2 hours when all they're willing to use is picture cards. Sorry- that turned into a lot more of a vent than I intended! xx

[Terry]

Hi Chrissie,

I do feel for you, many of us would love the effort and attention that you have put in to help her. We know most of your frustrations and can only sympathize with you.

It would be so nice to get her to live life better but seems like she's set in her ways.

You can led a horse to water but can't make it drink.

Hugs, Terry

[Gillette]

Hi Chrissie,

There's absolutely no need to worry about ranting on here, ranting is most welcome - not so sure about raving, though! Ha ha ha.

Sending hugs. Take care of yourself.

[Ellie]

Hi Chrissie.

For some people, retaining control over every aspect of their care trumps everything else, given they have no control over their disease.

You've done so much for your Gran and tried so hard to help her, I guess now the best thing to do is to support her decisions, difficult though that may be It is what it is unfortunately....

Sending you a big hug.

Love Ellie.

[Kayleigh]

Dear Chrissie,

I think that you are a wonderful granddaughter. Although it must be frustrating for you if your Gran refuses things that she is offered, the important thing is that you are making sure she knows about them so that she can accept them if she wants to.

Undoubtedly you are a ray of sunshine for her when you visit and she enjoys your company immensely. Please know that you are doing everything you can for her and although she wants to spend most of her time in her room, to her that is where she is most happy, comfortable and relaxed - and she can always ask to be taken to the dayroom etc if she wants to.

Regarding communication aids, it will probably all sound very daunting to her and losing her ability to talk is probably not an easy thing for her to contemplate. If your Gran hasn't been shown any communication aids yet, perhaps a speech and language therapist could show her some examples. Your Gran might like time to think about the options before she is ready to decide what she might like to use.

You always kindly and thoughtfully have your Gran's welfare and well-being in mind. I think it's great that you make sure she is being looked after properly, while respecting her right to make her own decisions as much as possible.

Love Kayleigh xx

[Deb]

Hi Chrissie,

You are a fantastic granddaughter, who is doing everything possible in very difficult circumstances. Your Gran is lucky to have you and I am sure she knows how much you love her.

Please dont say sorry for having a rant on here but make sure you take care of yourself and get plenty of rest .

Love Debbie x

[Broostine93]

Thank you all for your kind words

I really do think it's a case of her trying to be a martyr- if it does give her that sense of pride and/or being in control as much as she can be then I guess that's the way it has to go.

I wouldn't exactly say I'm a ray of sunshine when I go to visit- most of the time, my way of getting through this is to stock up on as much info about the condition as possible- i.e. I'll go in to her and let her know when new theories about causes of the disease crop up or I'll tend to inform of certain cases where the progression was particularly slow or particularly fast. I know it's not what she always wants to hear, but, to me, knowledge is power and it helps to know what's coming next etc.

A lot of it kinda comes out of my mouth like 'word-vomit' because I very rarely have anything new and exciting to talk to her about when I visit (there's not much I can really say has been happening when, since my last visit, all I've done is eaten, done some housework, slept and then gone to work the next day!)

I've tried the 'usual' things like asking her if she wants puzzle books or dvds or some craft activities to do etc. She refuses everything except for books (I think because the carers would have to assist her with everything else i.e. putting the dvd disc in for her). I am very much now dreading this being a long and drawn-out end where the only thing she does on a day-to-day basis is wake up, stare at the same spot or at the tv, go to the loo, eat the same food and then go to sleep.

Take care all- it's a crazy and uncertain journey we're all on, that's for sure xx

[Terry]

Don't be too hard on yourself, Christine,

It's a impossible situation when people won't expect anything or try. Just talk about your what your family etc are doing and anything else you can think of. Maybe read her the news or a book. You can get talking books in a compressed format so one disc lasts six or so hours.

Love Terry