Looking for advice to help grandmother with RA

rgt2

Hi,

I am quite new to the forum and I do not suffer from arthritis. However my grandmother has had rheumatoid arthritis for many years and she is now struggling with many daily tasks.
I am hoping to learn more about what she is going through because as well as being in pain, she seems quite ashamed of the difficulties she experiences.

For instance, she now only leaves the house occasionally because she is embarrassed to be using a wheelchair, and she will only go out in it with my Granddad. It is also quite difficult to know how to help her as she never complains about the pain she feels, and does not want to be treated differently.

If anyone has any advice for how I should approach the subject with her this would be appreciated. I want to reach the stage where she feels comfortable to talk about her experience, and to know that no one would view this as just complaining.

One aspect of her RA that she has discussed with me, is that she is now unable to write letters to people due to the pain this causes. She misses writing a lot, so I would like to help with this so she may at least continue with the activities she enjoys.
I have been looking for writing aids that I could buy for her, but as I do not suffer from this myself, it is quite difficult to know which products would be effective. Any advice on which aids people have found to work would be helpful.

Thanks.

valval

hi she is lucky to have some one who cares this much for her.
firstly the pain is bad but to be honest the exhaustion and depresion can be worse, put spoon theory in search and read it.
can she use lap top get her dragon soft wear this will help her comunicate and if you can get her on here to read what others post she will feel less isolated knowing there are others she can comunicate with who understand how hard life can be. it affects all of your life in ways that are hard to explaine if you are not living with it.
try putting weights on your ankles and wrists also tight belt on waist and brace on neck just for an hour now wear dark glasses (lots of us have site trouble) and peas in shoes.see how it feels just for a short time. just a thought if she can not use lap top get typewritter for her brother still do basic electric ones that you can still get ribbons for good luck val

stickywicket

One thing I find a bit sad, rgt2, is that your grandmother ‘now only leaves the house occasionally because she is embarrassed to be using a wheelchair, and she will only go out in it with my Granddad’. I think most of us have felt acute embarrassment when first using a wheelchair. It’s composed of all sorts of things – feeling like a child in a pushchair, feeling a bit of a fraud because one can walk (just not far enough), feeling people who know you will think you must be either putting it on or else in a really bad way. It’s all very logical but not at all helpful. By overcoming these feelings (It doesn’t just happen: it has to be an act of will) she will open up so many more possibilities and so much more enjoyment.

I wonder why she’’ll only allow your granddad to push her. Being in a wheelchair can be a bit scary. Not everyone is a ‘natural’ pusher and, worse still, many pushers take complete charge and don’t listen to important instructions from the person sitting there. All this might need to be dealt with too.

A lot of us are quite fiercely independent but there’s a difference between that and being ashamed of our situation. I think the more you can help your grandmother to open up about how she feels the better. I suspect this will be difficult. Perhaps you could tell her about this site, read up for yourself on how others cope with things (The ‘Simple Ideas….’ Thread near the top of the page has several suggestions) and share some of these ideas with her. She might get interested enough to want to look for herself.

frogmorton

rg2

Your poor Grandmother

I am so sorry she is feeling like this and has got to the point where she is getting isolated.

Does she use the PC at all? Would she use it? I only ask as there is something called dragon software which converts voice to text so could help her a lot with her letters.

I also don't know how good/bad her finances are and whether she would be able to afford/would be interested in an electronic scooter to increase her mobility (and take some of the stress off Grandad) they could also 'walk along' side by side too.

Some folks are 'group' types some not, but if she might be chances are there is a local branch of arthritiscare nearby and she could meet some other folks in a similar position. It can really help you to feel better about yourself mixing with others....of course if she is a computery-type then she might like to join us lot

I think she is lucky to have such a lovely grandchild too.

Love

Toni xxx

Soretoe2

I have just joined today, after reading the posts on the site for a long time.
I am also a grandmother - of five boys under 7. I think your grandmother is very lucky to have such a caring granddaughter as you.
I have had both RA and OA for 55 years. It has been and always will be hard going.
However the love and support of friends and family are everything.
I have several hand aids that I purchased online, for writing, preparing food etc; and to help type on the keyboard. I also use a rubber that fits on the top of a pencil (very cheap for loads) that helps for short periods of typing. This means that my fingers aren't hitting the keys as my hands and fingers are very arthritic and extrememly painful. It also helps to have a padded wrist rest that enables me to lean my forearms/wrists on when typing. These are easily bought as lots of people without arthritis use them.
There are many aids available online but you do have to look at several sites as the prices vary. I also have a readeazy book holder. I wouldn't be able to read without it.
Although your grandmother may be resistant, helping her to feel confident about going out is very important. I truly understand how she feels as I still feel embarrassed but can only urge you to encourage her gently.
I would be happy to e mail her if she feels that I could help in anyway as one grandmother to another.
Keep supporting and showing her how much you love and care for her. X

dreamdaisy

Hello rgt2, it's lovely to meet you and I hope we will be able to help with advice and support. I can empathise with your grandma re the painful hands and trouble with writing, my wrists and fingers are affected by PsA (psoriatic arthritis) and on bad days writing is a very troublesome chore (I do quite a bit on a day-to-day basis as I work as a private tutor for dyslexics). I swear by my Yoropen pencils and biros, but even they can be painful on a bad day - so I dictate to the pupils and they write for me. I like delegation if it saves me pain.

I think someone has already mentioned the Dragon software, quite a few on here use it and find it helpful but if your granny is not a 'tech head' then perhaps some gentle computer tuition could be arranged to help her gain confidence. I am saddened that she is reluctant to leave the house - arthritis can be very isolating but I reckon that even though she may feel that there are spotlights around her complete with a big pointy finger over her head actually no-one will take any notice of her being in a chair because people don't. They are too wrapped up in their own lives and concerns but I can understand her self-conciousness about it. Over the years I have learned not to worry about what people might think or even say - I have to use aids to help me get around and that's that. Somewhere on here Sticky did a wonderful thread based on advice for wheelchair pushers: I think it should be printed onto the backs of all chairs because it has some serious points within but stated with humour.

Scooters are good, they can be hired from mobility centres in towns for shopping trips but if your grandma claims DLA (the mobility part) that payment can be used towards paying for one under the Mobility scheme. I'm bearing that in mind because I now use a rollator on a regular basis so I guess my scooter days are fast approaching. It is very easy to lose one's self-confidence and maybe this is the case for her - re-gaining it is not easy but with one small step at a time it can be rebuilt. I wish her well and I hope we have given you some useful ideas. DD

stickywicket

Soretoe2 wrote:

I have just joined today, after reading the posts on the site for a long time.
I am also a grandmother - of five boys under 7. I think your grandmother is very lucky to have such a caring granddaughter as you.
I have had both RA and OA for 55 years. It has been and always will be hard going.
However the love and support of friends and family are everything.
I have several hand aids that I purchased online, for writing, preparing food etc; and to help type on the keyboard. I also use a rubber that fits on the top of a pencil (very cheap for loads) that helps for short periods of typing. This means that my fingers aren't hitting the keys as my hands and fingers are very arthritic and extrememly painful. It also helps to have a padded wrist rest that enables me to lean my forearms/wrists on when typing. These are easily bought as lots of people without arthritis use them.
There are many aids available online but you do have to look at several sites as the prices vary. I also have a readeazy book holder. I wouldn't be able to read without it.
Although your grandmother may be resistant, helping her to feel confident about going out is very important. I truly understand how she feels as I still feel embarrassed but can only urge you to encourage her gently.
I would be happy to e mail her if she feels that I could help in anyway as one grandmother to another.
Keep supporting and showing her how much you love and care for her. X

Hello soretoe2 and welcome to you too. It sounds as if you’ll be a big asset to the forum as you’re clearly very experienced in ‘useful gadgets’. (Why not copy bits of this post into our ‘Simple Ideas…..’ thread near the top of this page as others might find your comments helpful?)

Have you tried a Kindle? Many of us on here find them very handy as they are so light and there are no thick spines to negotiate.

May I suggest, to both you and rgt2, that most of us on here don’t exchange email addresses until we’ve ‘known’ the other person for some time. It’s just a precaution. Emails aren’t normally necessary anyway as we can PM each other safely on the forum.

Soretoe2

Thankyou Stickywicket for your welcome and reply. You are absolutely right about emails.
I must confess being fairly new to computers and wouldn't know where to start 'copying' to another part of the site. In fact it has taken me a few goes at just joining. So please excuse any mistakes I may make.
Maybe I could just make a small list without actually copying?
I have been very moved by so many of the posts I have read over the last few months.
Kindles are great ideas for lots of people.Sadly I am unable to hold one for long enough to read a page.My sister loaned me hers to have a go. It will not fit successfully into any book holder that I have. ( I have three different sorts, the readeasy being the best for me, though it has to sit on a non slip mat on my lap).
However I think I may have strayed from the subject a bit. Sorry if I have it may take an 'old bird' a while to get the hang of things.
Thankyou again.

dreamdaisy

Hello Soretoe, I too have a Kindle; when stuff is rough I rest it on a pillow and if I need it higher I use a cushion on top of that! DD

stickywicket

I think all us 'oldies' came late to computers. My own learning curve involved lots of frantic phone calls to my son when he left for uni with a new laptop and bequeathed me his old Amstrad. I now do very well in very limited areas but that's fine by me.

You can do, or not do, anything you like on here. If you do wish to copy stuff (here, or anywhere else), here's what to do.
1. Press the 'control' key down and click anywhere on the text to be copied. Still holding 'control' key down, press'c'.
2. Go to wherever you want to copy it to.
3. Click on 'control' and 'v'.

It should all be there.

dreamdaisy

:shock: I never knew that. Live to learn then learn to live. Thank you Sticky, I'll give that a whirl. DD

rgt2

Hi, I'm sorry this post is so long, I'm sure I will have probably replied incorrectly but I am very new to this. I just wanted to reply to everyone who has helped and say thanks.

@valval -
Val, thank you very much for your tips about different methods for keeping comfortable, such as 'tight belt on waist and brace on neck'. I will suggest these to my Nan, however some may not be possible due to frailty.
I am also sure that it would be extremely positive if she could come onto this forum and speak to people who are going through the same thing. I think this is one of the main problems for her, as she has no contact with anyone else with arthritis, which is perhaps why she does not express her difficulties openly.
Unfortunately she is not a technical person, as I am sure this would not only ease many tasks such a writing, but also open up other doors to give her wider enjoyment. Your suggestion that she try a typewriter instead of a laptop may be something she is more comfortable with. I have also done a quick search for Spoon Theory and I will be reading this as it looks like it will be very insightful.
Thank you for your advice.


@stickywicket -
Thank you for your response. Your points about possible reasons why people feel embarrassment or unease when using a wheelchair were particularly interesting. I had never even considered some of these perspectives, believing my Nan's unease was due to her increasing lack of independence. However I think it may have a lot to do with what you say about 'feeling a bit of a fraud because one can walk (just not far enough)'. I really appreciate the advice such as this because I want to understand how she feels without making her feel uncomfortable or incapable.
I think the reason why she only lets my Granddad push her is because he has now effectively become her carer, and so he is fully aware of the situation. Also I never realised that there were specific ways in which you should push someone in a wheelchair. Although I would not take control away from my Nan, it is interesting to learn that there are other things that need to be taken into consideration too.
I agree with you that it is important for her to overcome her worries over this, because she really will be able to experience a lot more enjoyment and options too, so she can make decisions about her own life.
Thanks for your concern and information.


@frogmorton
Hi Toni, thank you for the response. From what most people have said it sounds as if the Dragon Software may be the best option for my Nan. I will definitely look into this.
Also, I think that an electronic scooter would take a lot of strain off both of my grandparents. However I think for the moment at least, she would still have the problem of her lack of self-confidence to overcome first. Their finances are not great, but I'm sure the family would be able to contribute if ever she feels more comfortable with a scooter. It is certainly something to suggest to her, as long as I approach the subject gently.
It is a shame that my Nan is not a group type of person, because I think any interaction with fellow sufferers would be useful to her. I think I may have more luck with encouraging her to speak with people on here really, as long as I help her along and make it something fun we can do together.
Thanks for your help.


@dreamdaisy -
Hi dreamdaisy, I think you definitely have the right attitude towards using aids. I hope I can support my Nan towards feeling something similar, because it really is true that people are more concerned with their own lives to notice. Although I know this is the case, I'm sure it's quite different when you are the person experiencing it. Nevertheless ensuring that she does not become further isolated is more important, so I will keep trying to increase her confidence.
One thing I have been doing which might help with her confidence is that I sometimes now do her nails for her when I visit. This is something she hasn't been able to do for herself for many years, so it would be good if people could think of any other activities like this that would be enjoyable for her.
Unfortunately, it sounds as if you experience similar pain to my Nan, but your first-hand knowledge is very helpful so I think I will be buying a Yoropen pen for her. Thanks very much for your suggestions and for pointing me in the direction of stickywicket's post on advice for wheelchair pushers.


@Soretoe2,
Thank you so much for your kind offer to email my Nan. If this is not something that is usually encouraged on the forum I completely understand, however if there is a way for sending someone a message, then I think my Nan would really appreciate it, if you were still willing to. I have been quite touched by how much people obviously want to help fellow sufferers, and it would be wonderful if my Nan could have contact with someone who really understands what she is going through. I think it would encourage her to come and view the forum more, as it may be awkward for her to just read what I have said on here. Either way, I really appreciate the offer.
I am sorry to hear about the difficulties you have had through arthritis over so many years. However it is very encouraging to hear how motivated you are, and to know that so many activities can still be enjoyed if you make the effort to find the right support. I have seen the readeazy book holder online, and if after I have gradually increased my Nan's interest in using the PC, I will be trying your tips for easier typing too.

Thank you to everyone who has offered such helpful advice. I hope I can help my Nan to get to the stage where she feels comfortable to come on here and get to know others who understand.

Roz

stickywicket

Please don’t apologise for taking the time to reply in full. And, there’s no right or wrong way – only the way you choose to do it.

I’d have reservations about a typewriter as opposed to a keyboard. Typewriter keys, at least as I remember them, take a lot of pushing down unlike a keyboard. But learning to use a computer would certainly open up a whole new world and there are free online courses to learn by.

As for the wheelchair, a big incentive for using one is if it’s going to take you somewhere where you very much want to go but can’t without it. For me that’s usually out in the countryside (followed by a pub lunch) but your grandmother might prefer shopping or looking round neighbouring towns. If her wheelchair was supplied by the NHS, she was probably given a booklet with it which gives basic hints on pushing one ie forwards for up kerbs but backwards for down.

As regards scooters, many shopping centres and attractions have one or two which are for use by anyone who needs them. Usually they don’t charge but may ask for a small donation. Perhaps this would be a way for her to try one out.

I think it’s a lovely idea that you do her nails for her.

roses1

Hi Roz,

Was just reading through this and you misunderstood what Val said about the weights etc! PLEASE don't put them on your Nan ! she was just explaining if YOU did these things to yourself for an hour or so that is a taste of what its like for us suffers.


If your nan likes to write and finding it difficult to grip pens etc You can get some 'pipe insulation' stuff and cut a bit off and wrap round pens you can also do knives forks spoons and anything else that you think may help make gripping easier. Thick pens,are easier to hold too.


Welcome to the forums and its lovely that you are trying to help your grandma

Rose x

rgt2

stickywicket wrote:

As for the wheelchair, a big incentive for using one is if it’s going to take you somewhere where you very much want to go but can’t without it. For me that’s usually out in the countryside (followed by a pub lunch) but your grandmother might prefer shopping or looking round neighbouring towns.

Hi stickywicket, this is a really good idea. She used to love going out for pub lunches so I will invite her out for a meal and hopefully this will encourage her.

stickywicket wrote:

As regards scooters, many shopping centres and attractions have one or two which are for use by anyone who needs them.

I am also going to look online if there is any information about local shopping centres that do this. It could give her a chance to try a scooter without there being any financial pressure.
Thanks for the help.

rgt2

roses1 wrote:

Was just reading through this and you misunderstood what Val said about the weights etc! PLEASE don't put them on your Nan ! she was just explaining if YOU did these things to yourself for an hour or so that is a taste of what its like for us suffers.

Hi Rose,
Thank you for correcting me on this! I was quite unsure of how it would even work, but I just presumed it was due to my lack of knowledge on the subject!
Now I understand though, it does seem like a good idea. It may help me to realise more accurately just how much of a struggle it is to do the tasks that I take for granted.

Thank you also for the suggestions about aids for gripping.
Roz

stickywicket

rgt2 wrote:

She used to love going out for pub lunches so I will invite her out for a meal and hopefully this will encourage her.

Check first with the pub that they have wheelchair access and an accessible loo. (W**th*rsp**ns pubs are good for these.) If your grandmother can walk a bit, you can ask where it'll be convenient to leave the chair and she can sit like everyone else while in there.

rgt2

@stickywicket - I think leaving the wheelchair somewhere before we find a table would be a good idea. It seems to be that generally she just does not want to cause any hassle, or to have to go through a lot of difficulty for something that should be very simple (i.e. finding a place to sit in a pub).

Unfortunately this is probably not an easy job with a wheelchair, particularly if I will be new to pushing one. So she will hopefully be more at ease with going out if the chair can be put away when she wishes. It should also remove any extra unwanted attention being drawn to her so she can just have a normal day.

Thanks for the ideas
Roz

dreamdaisy

I think your grandma is very lucky to have you in her life. Do you have a laptop? If so, could you take it round to her house and show her us? (You know what I mean!) I too felt very alone, I was 'the only arthritic in the village' (as far as I knew). My problems started in 1997 at the age of 38, then in April 2010 I found here and have never looked back. I am still 'the only arthritic in my village' i.e. I'm the only one in my social group who has these troubles but I'm looking forward to some of my friends joining my sad little party as they age. And telling them to 'buck up' and 'it's as bad as you choose to make it.' My phone's ringing, I'll come back later. DD

rgt2

Hi DD,
Yes I have a laptop, and my boyfriend gave his old one to my Granddad a couple of years ago, so they have one. Theirs' does not have the internet but I could take mine round.
It is a shame but my Nan has never been interested in using the one they have, although I'm sure she would enjoy coming onto the forum once she gave it a try. Especially as there is such a diverse range of ages and technical abilities on here.

I would really like to show her the kind suggestions and concern people have shown towards her, but I'm worried it might make her feel uncomfortable to have parts of her life that she keeps very private being discussed.

What do others think about this? If it were me in the same position, I would appreciate it; but my Nan has no experience of the internet and so may find it strange. Not to mention her feelings of embarrassment and unease in general.
It would be helpful if anyone in her position could say how they would feel.
Roz

dreamdaisy

We're not discussing 'her' as such, it's more the situation. Arthritis is very isolating if you allow it to be so, finding others who knew what I had experienced, was experiencing and may experience was (and is) a source of great comfort. I have many 'virtual' friends here on the forum and a number have become 'real' friends inasmuch as we natter on the telephone and I have even met a couple. My husband is supportive and understands as much as he can - he never pressurises me to get on with things or criticises me for my lack of energy etc - but to talk to people on here who really know what the tiredness is like, who know how the pain can pull you down emotionally, who understand the depression that can hit from time to time (and that must not be ignored or brushed away) people who generally 'get it', well, it does help. Probably the most valuable thing is that here is a place where one can come and vent all one's annoyances and frustrations, as I did last Saturday. Why should I take my misery out on the nearest target whose fault this isn't? At least on here people can choose to read or not!

This situation may also be putting a deal of strain on your grandad. Caring is not easy and the older you become the more challenging it can be. Arthritis does not only affect the patient, it sends its nasty little ripples here there and everywhere, it touches everyone. This is an aspect which can fly under the radar, we didn't realise how much my Mother-in-law was doing for dad until a few things went horribly wrong.

Now, other treats you could do for your granny: you could style her hair or give it a good, thorough but gentle brushing, apply some make-up if that's her thing (one of the nicest things a nurse ever did for me in hospital was moisturise my lizard-like legs, it's these little things that make a difference to how you physically feel). If she likes doing puzzles or jigsaws then try that with here (there are some good jigsaw sites on the internet) but of course all these suggestions are dependant upon her character. The most valuable thing though would be to remind her that there is still a life to be led - it may not be one that she wants or likes but arthritis must not be allowed to ruin - or run - everything. I used to allow mine to dictate to me but I learned from Sticky that actually I'm the boss. I am now 53, I use a rollator on a regular basis so that I can get out and about, I don't like that but so what? It's the thing I have to do to make sure that I can still take part in things as much as I can. And you know what? Once again I can queue in M&S - my days of looking at the queue and walking out without what I wanted to buy are gone! Yippee! I'm poor again! DD

rgt2

That's really great to hear that you have overcome so many of the extra barriers that surround the arthritis. I'm sure everyone here has good days and bad, but as soon as I looked on this forum I noticed such positive attitudes. I know I can never fully understand, but you really should be proud that you have come so far.

I think your personal experience of the forum shows just how much mutual support there is to gain for people. I think initially, I am going to print off the posts such as this, and other messages of encouragement that people offered, and show these to my Nan. That way she can see what the forum is like for herself but without any pressure on her.
The more I read here though, the more I realise how much it could both comfort and motivate her.

And you are entirely right about the strain that there is on my Granddad. Particularly as he is an incredibly independent person, and he has many varied interests. He pursues these as much as he can, but he will not leave my Nan alone for long periods, so his life is being dictated by it too.

I think I simply need to see them more, so I can stay with my Nan and help her to enjoy herself, while my Granddad can gain some time to enjoy his hobbies. I will do her hair for her and I think she might appreciate your suggestion of moisturising, as I did this for her hands when I did her nails and she seemed to like it. I have also bought her a couple of audiobooks as holding a book would be difficult, but she hasn't said what she thinks of these yet.
Anyway, thank you very much for all of the tips. It will be nice to give her something extra to look forward to rather than just having typical visits.

dreamdaisy

Hello again, did you find Sticky's thread about tips for wheelchair pushers? I'll go and hunt for it, because that is worth printing. I'll bump it back to the top and I hope it will stay on the first page for a day or so. As for adjusting, well, we have to else the disease wins. I'm not allowing that. DD

Soretoe2

Hello rgt2, I'm also getting used to this site and have been looking around it in general. This is why it's taken a few days to reply to your post as I'm limited by time I can sit up and type, also I am easily distracted!
As said I fully appreciate the difficulties of 'not knowing who you are contacting'. This is one reason why I plucked up the courage to join this wonderful site. I felt that everyone is so friendly, open and helpful about so many different problems that life throws at us.
I am happy to offer any support your grandmother needs, if possible of course. Perhaps you could pursuade her to look at this site through your computer and read some of the entries and get her to ask her own question, through you.
Your grandad also needs a great deal of support as he will probably be feeling pretty helpless and feeling very low himself. Try and smile and be as cheerful as you can when with her, hard though it will be for you.
I know that telling her that loads of people live with extreme limitations and have had terrible and depressing times will probably not make the slightest bit of difference to her. However in time she will become more used to whatever her own personal demons/limitations are but you may have to accept that she may not be willing to help herself as much as you would like.If this happens please do not blame yourself. You are a wonderful granddaughter and deep down I know she thinks so to.
Do you think she may be clinincally depressed? Her gp could help with this. My mother was in a real state for several years and refused to go to the gp. In the end my sister and I went to see her gp and she agreed to a home visit. Mum was not very pleased with us (we were there when she came) but eventually we got her to take an anti-depressant with her heart pills. She slowly improved and now, 2 years later she is calm and happy, where she was angry and unhappy before the medication.
This may not be the right approach for your grandmother though. In my mother's doctors they have an Elderly Care health visitor, who my sister and I saw and discussed everything. She had many suggestions and offered lots of practical help. Your grandmother's surgery may have one of these if you enquire.
Lots of people have given you good advice, all you can really do is 'be there' for her and encourage her as much as possible.
Well, sorry if I've gone on a bit, I just feel for your grandmother so much.
Although I have lived most of my life as a disabled person I still find some days very hard and the older I get the harder it all seems to become.

Stickeywicket, thanks for the copying info, it still sounds very complicated, or is it just my poor brain which doesn't seem to function as well as it used to.

Dreamdaisy, you made me laugh with your lizard legs, I also have them and there's nothing nicer than my hubby massaging my cream in.
I'd love a kindle I just can't hold one, the pillow sounds a good idea but it may not be at the right angle for me, perhaps I'll get my sister to bring hers over again and try it again. I get by with my readezy holder that my husband has stuck rubber to, to help it stay in place. He also made a small tray to sit it on which works for me.

Sending lots of positive vibes ( my 1960's period left it's mark) to everyone and hope you are all having a reasonably pain free day, enjoying the Olympics and the sunshine.