Hi all, I’m new here and am in need of a listening ear or two! I care for my 87 yr old mum who has had PD for about 11 years now. Reading up on the signs and stages l would say she is very advanced.
She is very stubborn when it comes to seeking intervention from medical professionals. In the past I’ve tried to involve the PD nurse specialist (who visits every 6mths or so) who suggested a visit from a speech therapist and the neuro rehab team who have been good in supplying equipment around the home. I can not get her to see her care of the elderly consultant (as she refuses to leave the house anymore). Moreover she won’t let me ring for a GP home visit as she says there’s nothing noone can do for me now. I’m am my wits end as to her ongoing care and I would value some support as to what I can do to help and keep mum going.
She really has no quality of life; sitting in a chair all day in constant pain. She never goes outside (not even to the garden) and is suffering tremendously. The only 'enjoyment she has is me reading to hear and listening to quiz programmes on TV. (She’s blind and her hearing is not food either) she eats very little apart from cereal, maybe a yogurt for lunch and a small cake slice for tea. Sometimes I can get her a small slice of chesse on toast but that’s about it.
I’m sorry to ramble on but I’m at a lose as to my next move in trying to keep her going.
Anyone else in the same position? Anyone have any kind words for me…? I would be extremely grateful.
From a loving daughter xx
Hi @Debbie4767,
My thoughts go out to you and your mum. Parkinson’s affects everyone differently and those with advanced Parkinson’s can often feel like there’s no hope, so your mum is not alone with how she’s feeling. We have a list of of contacts and organisation that can provide help and information to people in the advanced stages of Parkinson’s, or those who care for them. You can find this information here - https://www.parkinsons.org.uk/information-and-support/advanced-parkinsons-useful-contacts.
It’s also important that you get the help and support that you need as her carer, it is not uncommon for carers of people with any long-term condition to feel isolated or frustrated about their situation. Knowing where you can get support or extra help from is important and you can find this information here - https://www.parkinsons.org.uk/information-and-support/caring-someone-advanced-parkinsons.
Lastly, our helpline service is always here to provide you with more support so please do not hesitate to call us on 0808 800 0303.
Do take care and I’m sure you’ll hear from our members soon.
Best wishes,
Reah
Many thanks for your reply. Most of the pages you refer to I was already aware of but I have sought out the helpline Single Point and will be making contact with them myself as mums carer as I think you will be able to offer me emotional support as I don’t know where else to get this. (I also have your helpline number)
I have been trying to contact our local Parkinson’s advisor but no avail. This has been taken up by Janye Riggnall who has told me that someone will be in touch with me soon. I do hope this is the case.
Mum has given up on herself and I am seriously worried that I can not do anything to help her. I don’t know what help I can give her, apart from love and kindness, which l find so hard to deliver as I have my own health issues.
Thanks again for your kind words and suggestions for support.
Debbie
Hi @Debbie4767,
I truly feel for you and I’m sure you’ll hear from a Parkinson’s advisor soon. However, in the meantime, do consider the carer contacts I shared with you so that you are getting the support you need to help your mum.
Do take care.
Best wishes,
Reah
Hello, there’s not a lot I can add to the advice Reah has given but just wanted to say you will always find a listening ear here on the forum, it is a safe place to vent your frustrations, worries or anything else with people who understand by doing of having PD themselves or being involved with someone who is. Don’t ever feel you are totally alone and even if its 2 in the morning you can post if you need, chances are you will get a quick reply as quite a large proportion of the PD population are awake in the early hours!!
Look after yourself. Best wishes.
So sorry to hear about your difficulties. It can be very hard, as you are only too aware. I can’t offer you a fix for this difficult situation but a few things that have occurred to me that might be worth bearing in mind.
Firstly, nobody would find this situation easy. It is a tough road, but you are still on it, still trying to work out what you should be doing, and a lot of people would not have the strength to do this, so don’t be hard on yourself. You’re doing something remarkable.
Some more specific things: lack of motivation is a part of PD. Dopamine is a motivational chemical as well as one that delivers the ability to move. PD deprives the sufferer of dopamine, so it is to be expected that your mother will not want to do much and might have given up on going out or seeing medics. I am sure the Parkinson’s UK helpline could perhaps make some suggestions, or, if you could speak to the nurse specialist or the local Parkinson’s group if there is one, you might find some assistance there. Not wanting to do anything is frustrating, I know, but it’s all part of the disease.
If your mother is on L-Dopa (usually Sinemet or Madopar) you might consider changing her cheese for a fake cheese or something else. Sainsbury’s, Morrisons and Tesco all sell cheese that isn’t made of milk. I suppose it’s vegan ‘cheese’. For reasons I don’t understand, cheese can stop L-Dopa working – it’s not just the protein in it, which can also interfere with the absorption of L-Dopa, it’s specifically cheese. So if your mum is on L-Dopa, try stopping the cheese and see if it works better. It might help.
Finally, your mum still gets some pleasure from things – like you making some food for her that she still likes enough to eat it, and you reading to her. It might not be the life you would want for her or that she ever imagined, but you’re still bringing her a little bit of joy. You should be proud of yourself for doing this. It may be everyday stuff for you, but it still deserves praise. Without your remarkable efforts, things could be so much worse.
I hope you get some of the help you need, and soon. Sincere best wishes.
@tiredcarer,
Firstly, thank you for your extremely kind words of support. You sound as if you have inside knowledge and I suspect maybe in a very similar position as myself. Mum is on a very high dose of Madipar but noone has ever mentioned the connection between that and cheese. Indeed mum loves nothing better than a cheese sandwich or cheese on toast. Maybe swapping it for fake cheese would help. (Especially if I don’t tell her)
Secretly, I am really proud of how much I do (esp. in light of my own health issues) and deep down I do know mum appreciates all I do for her. She just hardly ever says so!
She always grumbles and gets upset if I even so mentions having a break. Her argument is always “I’m not that much hard work, all you do is sit n read to me”. Whereas in reality, I’m here 24hrs a day 4 days a week and 22 hrs for 2 days, and 18hrs on a weds (as we have sitters a d my brother does weds). In that time, I dish out so much more than just tablets and food and drink for her, but I don’t need to tell you or any other full time carer that our cared for is always on our minds.
Aside from all my moans and grumbles, I obviously love mum dearly yet sometimes wish she was no longer here, so that I could get on with my own life. Does that sound harsh? I never mean it to.
Thank you again tired carer.
Take care of yourself and best wishes Debbie
Debbie, I am caring for my husband with advanced Parkinson’s so you have my sympathy. I don’t think you are at all unusual in sometimes wishing you could just get on with your own life, or, indeed, selfish. I very often feel the same myself. You do sound though as though you could do with some help in order to have some respite. I have just contacted social services for a carer’s assessment and, because I am finding it physically difficult lifting my husband etc, I am contemplating getting bedtime help for him. It’s not what I want to do but if we are to help our loved ones we need to keep ourselves fit and healthy and sometimes just have to accept outside help.
Hope this helps, and good luck.
I’m not quite in the same position as you, Debbie, but I have been caring for my partner for about 20 years. It is difficult sometimes but that’s all part of the job (not that I even get carer’s allowance, so if it’s a job, it’s unpaid). I’ve not got inside knowledge but I have experience. I guess you know that protein or a full stomach can also interfere with the effectiveness of Madopar? Best not to eat an hour either side of taking a dose. My other half only eats protein in the evenings, which means the evenings are a write-off sometimes, but at least the drugs might work better in the daytime.
I reckon you are doing well. Where would your mum be without you? I’m sure she knows that even if she doesn’t say so, though for all I know, she might, and obviously you do care a lot, even if you sometimes get frustrated. Keep up the good work and don’t be afraid to go to your mum’s medics and ask them for advice. There are slow release medications that might help her if she hasn’t tried them. Take care of yourself like you take care of your mum.
My heart breaks for you. I too am in a similar position as my husband has advanced Parkinson’s with every part of stage 5 playing its part.
You need help and a lot of it - don’t go as I did and think you can manage because you cannot. Grasp every opportunity of help you can and make sure everyone from GP to Social Services knows what you are dealing with. I am very strong-minded but the unpredictability of Parkinson’s and the terrible mind-altering effects on the sufferer also affects the carers. I am able to assure you there are thousands of us in a similar position, you are not in your own and I wish you a world of love and hugs xx
Hi @Lirene, 
Welcome to the forum.
Thanks for your comment and I’m sorry to hear that you experienced similar circumstances with your husband. If you need information or support on anything Parkinson’s related, please do not hesitate to ‘@’ me or feel free to explore our website here - https://www.parkinsons.org.uk/.
Best wishes,
Reah
Forum Community Manager
@SueM, thank you for your kind words. We already have morning and evening care, but I do know that I could do with more support with finding time for myself. I too get social services direct payment for 4 hours sitting service a week. It’s not much but allows me a break two afternoons a week to do my own thing. On the whole I am just about managing. At the end of November my brother has agreed to do a weekend for me so I will get two nights away. I can’t wait. Keep smiling on Sue and good luck with your carers assessment. xx
@Lirene, just by reading your words, I can tell they come straight from your heart. Its genuinely comforting to know that I am not alone (although at 3am when mum wakes having a nightmare, I AM) that so many others are facing the same problems day in day out. Our GP practice knows only to well I care for mum, but I often have trouble getting any type of help, (mum is housebound & blind too) having to explain time and again the circumstances. Social services are not much use as mum pays full cost for her carers. (She doesn’t qualify for any financial assistance) Their default position is that she is of sound mind and can make her own decisions so they can’t insist she has more care even though it may help me. She is also very strong-minded and refuses any more intervention from any service or charity. It seems only I will do!
It is very frustrating, but l also have to respect her wishes. Sending hugs back to you xx
I know this is an old stream but I am trying to find advice about caring for my husband. He was only diagnosed 4 years ago but has gone downhill fast. His physical issues are the main problem ( although he does have massive mood swings due to his anger ,anxiety and frustration - this is being help a bit by the anti- depressants he has been prescribed) he has episodes of what I suppose is freezing , where he becomes locked and ridged. These can last from 15 mins to the entire day. We get an occasional good day but most days are bad and the consultant has him on the highest amount of drugs he can have. He is 65 and a very big, heavy man and I am a very little person So I am finding it more and more difficult to cope with his care. The GP and Social workers ( who aren’t a great deal of help) says he needs emergency respite care at least but because of Covid this isn’t possible, believe me I have tried. I am told I need to arrange everything myself. Our home is no longer suitable for him as although we have made lots of changes over the last couple of years to accommodate him he is finding it difficult to move about in it ( when he can) so it might mean permanent residential care and I feel so guilty and bad for him. How do other people cope with caring when the disease becomes more advanced?
Hi @Chrissythreads,
A warm welcome to the forum.
Sorry to hear about the difficulties with freezing that you and your partner have been experiencing since his diagnosis. Unfortunately, many people are having these difficulties with accessing medical and care services due to the pandemic which, of course, isn’t helpful to you or your husband.
In regards to you husband’s freezing, I’d advise you to speak to his GP or Parkinson’s nurse about the best treatment for freezing - they can also refer your husband to occupational therapy or physiotherapy that may help. We have more information on this via our website here: https://www.parkinsons.org.uk/information-and-support/freezing
We understand that the conditions around Covid-19 has exacerbated a lot of issues that people with Parkinson’s face on a daily basis which is why we have information and support for carers like yourself . From expert advice, to support from specialists and our helpline. We’ll support you during this challenging time, all you need to do is answer a few short questions and we’ll direct you to the right type of support. Please visit our website here to get started: https://www.parkinsons.org.uk/information-and-support/parkinsons-support
We also have a team of great advisers via our confidential helpline that would be more than happy to speak to you in more detail about this. Feel free to give us a call for free on 0808 800 0303 or email us at [email protected].
Best wishes,
Reah
Forum Community Manager