Hi, I’m new here , this is going to be a bit of a ramble but I have no one to talk to and I really appreciate anyone who responds to me. I am feeling a little all over the place regarding my mum. So she’s 62 and for a good while now I’ve noticed her movements becoming slower with a shuffle walk. I put it down to her weight gain and lack of exercise and the fact she has underactive thyroid. She doesn’t want to go out anymore, hides away in her house and makes excuse after excuse when I offer to take her out for a meal or see her grandchildren. I haven’t seen her in person for about 2 months until Friday. We speak often on the phone and she told me she’s been diagnosed with type2 diabetes.
Anyway , when I finally saw her Friday I was really shocked, she seemed to be stooped over, again shuffle walking and her left hand was shaking uncontrollably. I didn’t want to point it out as I could see it was making her feel uncomfortable. I asked her if there’s anything else the doctors have said and she said no. I then text her that night asking her to promise me there wasn’t anything else and that she could talk to me etc… and she said no.
I’ve not slept well this weekend worrying about her and thinking I’ve missed signs.
So my question I guess is, do you think if a doctor had seen her recently they would’ve picked on this? Do I call her doctor…I know they cant tell me anything but next time they see her maybe look into it more? Does she actually know and she’s not telling me.
Other symptoms include, not sleeping, restless syndrome, slower speech, blinking less that normal.
Hello Della82
Welcome to the forum and ramble away if it helps, you are in a difficult position and are clearly worried. To be honest it is hard to know what to say that may help. She may be in denial but from what you wrote she doesn’t seem unaware that something is going on. Her doctors may have said more and she may just be frightened of the diagnosis if she has one, scared to admit to herself or anyone else, not understanding etv etc. In other words it could be any number of things.
Instinct tells me you need to approach it differently since you have asked and she has said no. I think she needs to know that you are concerned about her because you have noticed x, y, z but she also needs to know that she doesn’t have to discuss it with you if she doesn’t want to - she has that right - but you only want to be there for her. I often suggest writing a letter so you can get the words right and she can read it on her own without the pressure that goes with difficult conversations where emotions run high. I don’t think it will be any surprise to her that you are concerned since you are clearly asking questions and it may give her a way in to telling you whatever is going on. I also think it is worth ringing the helpdesk who may be able to advise you better than I.
Maybe this has helped a little, I do hope so.
Tot
Hi Della 82,
As Tot has said you are in a very difficult position.
Basically damned if you do and damned if you don’t.
Without knowing exactly what is wrong leaves you in an extremely precarious situation, from what you have said,
I honestly feel you have to say to her that you have noticed her hand shaking and her shuffling walk and not simply walk away.
Perhaps she feels that you can see what is happening and are simply ignoring it.
Asking her what is wrong, whilst you can actually see what is happening is, I feel counter productive.
A reason, of course , that she will not go out etc., could be that she is simply too embarrassed to let anyone see what is happening to her.
You said you had not seen her for about two months, and that could lead to a feeling of rejection by her and you are keeping away because of her condition.
Here I disagree with Tot, I feel this is not a time for letters, you really have to take the bull by the horns and sit down and have a talk with her.
She will in all probability shout and scream that she is fine and it is none of your business, however it is, she is your mom, so you will have to say you are not accepting that she is fine, you can see that she is not.
I really feel a bit of tough love, or shock therapy, is needed here if you can’t get through to her, by perhaps telling her you feel that she is getting to the stage that she will be totally unable to take care of herself, and you will call in, whatever government institution that exists in the UK, there are institutions like that in South Africa so I presume there must be there as well, to come and see her and if necessary hospitalize her.
Make her realize that you do love her and you are not prepared to let her kill herself by continuing like this.
This is certainly much more than Type 2 diabetes.
Oh and as Tot says, please ramble on as much as you need.
Talking always helps, and perhaps another of the members may have experienced something similar and can give you other advice.
That’s what the forum is for.
You could be right CliveV, maybe tough love is the way to go, I think it depends on the nature of their relationship. The reason I suggested a letter is so that it can say what you really want to say that can get lost in difficult situations and whatever we may think her Mum does have the right not to discuss it if she so chooses nor does she have to justify or explain her decision. I hope Della82 does ring the helpline - they may well have a better suggestion than either of us; it was a difficult post to respond to but we’ve tried to help CliveV and that’s all we can do. Hopefully between us we have helped clarify her thinking a bit and she can perhaps now see a way forward that wasn’t there before. I do hope so.
Tot
Thanks for your replies. I’ve called her doctor to explain my concerns so that next time she visits they will see my notes. They did offer an appointment so I could take her but its not that kind of relationship we have. She would be mad at me if she found out I’d even called them. The letter is a good idea however we have my aunts funeral to get through first (her sister) and I cant bear causing more upset right now , especially on my nan (85 ) who is also worried sick about my mum.
Sorry to hear about your aunt Della82, and you are right now is not the time to cause more upset. However take heart, you have started to address the issue ‘head on’ as it were so you are off the starting blocks. If you think the letter idea may work you could always start drafting it as you will probably find it takes several attempts to get it right. Even if you don’t end up using it, the act of writing it down can clarify your thinking and you may come up with another approach that will suit the type of relationship you have with your mum, better. Just a thought and again it depends on the relationship you have, but is it worth speaking to your Nan and see if you can find a way together to bring the issue out into the open with your mum. If I might make a suggestion if you choose the letter route - you don’t want a long over waffling one. It is better to be direct but make it plain you are writing out of concern and because you are worried and I think CliveV was right in his tough love option, in the letter you do need to spell out the changes you have seen in her so that she can see your concerns are based on facts, evidence if you like. If she hasn’t noticed, which personally I doubt, she will maybe take a fresh look at how she is and if she has noticed one way or another you will at least get a reply…
do let us know how you are getting on
Tot.
Hi Della 82 Welcome to our group sorry to read about your mum. In my opinion you sould take the bull by the horns and go with her to see the doctor you say that you don’t have that kind of relationship but you only have one mum. You will regret it if something went off and you did not know till it was two late. I know that when you visit your doctor it is confidential but if you are really worried then most Doctors will ask there patient if it ok for you in the consultation. The other way is to make your self a carer, not sure haw far away you live from your mum, I have now had PD for 13 years at first you would not known but it now wants to take more of me. I am fighting it as hard as I can but I have a good husband to look after me, It is hard if your mum is on her own and from what you say about your mum it sounds as though she is quite away though PD symptoms but I am not a doctor or PD nurse, The thing is none of us will get better only worse. So sorry to be blunt but like i say you only have one mum.
Hello Della
An upsetting and worrying situation yo find yourself in.
Do you have other siblings, if so speak with them to ?
I think Tot’s idea of a letter to your Mum is a good one as is a call to Parkinsons UK helpline. A letter to her GP also a good idea which I think you’ve done.
Your Mum maybe afraid for all sorts of reasons to admit to herself or maybe she has and doesn’t want to burden you. I think what she needs to know is that there are treatments which fir the vast majority of Parkinson’s sufferers (if indeed that us what she has) is hugely beneficial. Sounds like she us suffering from some depression which needs addressing, be it part if Parkinsons or otherwise. All in all with the loss of a family member it cannot be s great time for her. Does she have a close friend you could talk to , who may also have noticed changes.
On a more formative note, do you have LPA’s in situ. Lasting power of attorneys ? Something to consider, it is never too soon to create these at all stages of life, not yo be left till you’re elderly.
Sounds like you’ve made first steps, I wish you well, perhaps post funeral will be better for taking the next steps. All the very best.
Update- she had a fall at the weekend and we found her after not responding to messages , she had been there over 24 hours. I begged the doctors for answers and saw her medication- a quick Google and confirmed it’s for Parkinson’s. The following day she told us she had been diagnosed 3 years ago & been on medication since but didn’t want anyone to know and kept making excuses to not go out etc…
I’m heartbroken she didn’t talk to me but also so relieved we can now get the help she needs. I’ve no idea what happens going forward now, there’s no way she can live alone in her current house. She’s currently in hospital unable to move her legs at all
Hello Della82
Thank you for the update but it is difficult to know how to respond when all this, to you, new news has come out. I will say try not to mind too much that she didn’t talk to you. It is surprisingly common that the individual keeps their diagnosis secret, indeed fairly recently here on the forum a daughter only found out her mother had Parkinson’s when she found her tablets - the mother then admitted she had had her diagnosis ten years. There are all sorts of reasons why individuals take that path but the important thing is, as you have rightly identified, you know now and can give her the support she needs.
My feeling at the moment is that this is very early days and your mother has to recover from her fall first, Don’t lose hope that she cannot move her legs just now, with the right meds, physio and so on that may be temporary and I speak from experience here; during a hospital admission a few years ago I went right off my feet when my medication wasn’t given to me as it should have been. I couldn’t move my legs at all for several days and I was in hospital for a fortnight and then three weeks in rehab but got full use of my legs back. I only mention this so you don’t get discouraged it can be a slow business to recover and your mother is a good deal older than me.
As for everything else incl her housing situation I would expect her to be allocated to a social worker/OT or similar (it varies a bit depending on the local set up) but it would be highly unusual if this wasn’t the case as they would need to provide a safe discharge. It will obviously be a difficult time for you all with lots of decisions to be made but perhaps not as immediately as you think. I think it is worth your noting the helpline number 0808 800 0303 as they are neutral, experienced and it can be helpful to talk things through with someone like that if you feel like you can’t see the wood for the trees. You can of course come back to the forum whenever you need.
I wish you well whatever the future holds for you all and trust your mother will make a full recovery - I expect she is relieved you now know of her Parkinson’s even if she doesn’t actually say so.
My best wishes to you both.
Tot
Hello sorry to hear this even if it has now answered some questions for you. As Tot has said your Mum is probably relieved you now know her situation.
I’d add to Tot’s excellent response to your update that whatever Parkinson’s Suffers are in hospital for it invariably has some impact in their Parkinsons often caused by their medication not being given ontime plus their recovery can take longer. Timing of medication is vital for most Parkinsons suffers.
You can approach the hospital PALS team (Patient Advice Liaison Service) they are there for you medication your mother. They can help ensure your mother gets her medication on time and they maybe able to help arrange a meeting with Adult Social Services and Occupational Therapy with you facilitated at the hospital with your mother. Wish you and your Mum well.
Jane
