Stage 5- yesterday I cried for mum

Living with Parkinson's Carers, friends and family
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Not even sure on my reason for posting, other than to try to connect with others who have lived through this or just to get my thoughts down.

I don’t want to be referred to the Stage 5 info on Parkinsons or to call the Helpline : ). Even though the Helpline have been very good to me in the past- thank you. I am going to try to speak to mum’s Parkinson’s nurse next week.

So my 80 year old mum has had Parkinsons for 19 years. She has carers x3 times a day and my 82 year old dad (who has his own health issues), is the main carer.

I saw my mum yesterday and she is at the very complex stage. Whenever I see her, I try to get her to engage in whatever task she is capable of at the time (painting with a brush and some watercolour, simple baking etc) and treat it in the same way I do with my young kids- giving the tasks over that she is capable of that day.

However, yesterday was very sad when my recently turned 5 year old had to say, ‘nanny, that’s not how you cut a strawberry’ and some of the simplest of tasks would have her flummoxed/ reach out for things that are not there/ a couple of hallucinations and some intermittent unintelligible speech, even though this was temporary and would be interspersed with managing to communicate.

All I can say is, she is in the ‘consciously unconscious’ stage where she knows she is getting slower, things are getting harder and she knows when gobbledy gook has come out of her mouth.

The reason it’s all so challenging is, where do you even go from here?

  • when you should be in a wheelchair but you don’t want to give in to that and so you try so hard, even when it is in vain? She can barely stand, get her feet moving now and yet she will still try to get up which invariably ends in falls.
  • I would say she is in that place where carers x3 times a day is sometimes not enough and yet also- is she really ready just to lie in bed indefinitely? How do you continue to see the fresh air and get out in a wheelchair etc when it’s a case of ‘use it or lose it’
    I know there are no real answers. The Dr said a few months back that my mum was ‘doing ok’ for an 80 year old with Parkinsons.

I guess I am looking for anyone who has had a parent at this stage of Parkinsons to shed light on how you navigate this stage when you just never know what you are going to get on an hourly basis and everything is just such a risk in terms of falls etc and yet how you still manage to keep things interesting/ bareable. Also, where is the best place when the Parkinsons nurse says ultimately if you can stay at home, you will fare better. Is that still the case when you have an 82 year old carer and when is tje time that the hospice can offer you the care that is needed? How do you know?!!! Does anyone ever know? As you can see, this kept me awake at 2.45am this morning and then gave me nightmares. Thank you for sharing your personal insights.

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Hi there…just read your post and could not just pass you by…
I have no advice as its my Husband with PD and he is not at the same stage as your Mum yet…
I am just sending you a massive hug and telling you that I am thinking of you and your Family…as I am a firm believer that PD affects everyone in the family…my thoughts are with you and I hope you get advice from others soon…:gift_heart::gift_heart:

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Thank you. It means a lot that you took the to respond. It’s all so unpredictable. I should add that my mum still has her sense of humour so we we do the best we can to clutch at what joy we can, in amongst the hallucinations etc. My mum is aware that she is having hallucinations and describes them like two lives happening at the same time.

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Hi, HavanaS,
I too have no advice for you, sorry, as I myself have Parkinson’s. I was struck however by the fact that your mum sounds very much like what I myself may be in 7 years time when I reach your mum’s age. By then, if I live that long, I will have had PD for 19 years, like your mum too.
Of course the outcome of my illness could be very different, no one knows. But I do know I hope to be as determined as your mum and to do as much as possible for myself. Knowing what to do when poses a dilemma for everyone, the sufferer and the carer(s). I have no answers, but one thing is certain, whatever you decide, your mum will always love you and be grateful for all you do for her. She may well resent the fact she needs your care, but she will always care for you in her heart.EMx

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Hello ElleMac
Thank you so much for taking the time to respond. Yes- my mum was diagnosed at 62. My mum definitely has the determination. I should add that it’s all a case of seeing how things are on the day as to what can be achieved. We made fruit salad and moussaka with my little kids and they all helped where they could. I do a lot of ‘covering’ for my mum with the kids ie. helping her out with ´memory’ card matching games etc that I am playing with my 5 and 7 year old etc but we just do what we need to do to get by so that everyone has a good time.

I would say that my mum and dad have always had a steely determination. They ‘walked’ every day through lockdown for about a mile and have always had the mantra ‘use it or lose it’. I hope you are doing ok

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Hello
I was very touched by your story
As a carer for my 87 year old mum who has had pd for 15 years I think she is at stage 4
I am her main carer, she lives in a retirement village where she has 2x carer visits overnight and I do the morning up wash dress caring plus get her lunch then back at 630pm to get her ready for bed etc. she is very determined also, but as her condition worsens I think it’s only a matter of time now before she won’t be able to stay on her own any more and we’ll have to consider full time residential care.
But I feel overcome with guilt, I cannot bare it, she desperately doesn’t want to go into full time care but I feel I’ve done almost all I can. I would have her to live with us and care ft but my husband does not agree.
I have researched the meds, trying to make things better for her, but she keeps saying she wants to go to bed and not wake up, and when we hear of someone else we know dying, she says, ‘ lucky them I wish that was me’
It’s so hard to hear but very understandable as she knows exactly what is happening to her.
Not sure how long she can hold out where she is atm. She also keeps saying that ft care will use up all her money that her and my dad worked for all their lives. Life is very difficult atm so I completely sympathise with you.

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Hello alih
Havanas is right I think, you can only do what ýou can in țhe way that suits your circumstances as she is doing with her own family but it is very hard to see past the guilt that comes with the sort of circumstances you are now facing. Even if you know in your heart of hearts you are doing the best you can guilt has a way of worming its way in with a very loud voice, full of negativity and just about impossible to ignore- as I suspect Havanas will agree.
I wanted you to know that I have much respect for what you wrote in your post. To even recognise that your mother’s needs are increasing and her present living arrangements may need to change and acknowledging your husband’s views on her going to live with you is honest, brave and more than many can manage.
I also wanted to say a quick word about moving into residential care as it is almost always seen as putting someone in a home with negative overtones, when the reality can be far from that if you find the right home. On that tack, I don’t know where you are in the country but a new type of care home is a fast developing sector in many areas and are vastly different to the standard care home most people think of. They are more like 5 star hotels with all sorts of facilities. They are expensive but they can be funded via the purchase of an annuity. It is a complex area and I would strongly advise you seek advice from a specialist advisor, but it may be something that your mother would consider and that you would feel happier with. I think it’s worth finding out if there are any such homes in your area and arrange a visit, I think it will be a revelation. They are not the right option for all but I thought it important you at least know about them.
I wish you luck and please do let us know how you are getting on.
Best wishes
Tot

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Hello Alih
Thank you for responding. I understand how hard it is. Especially when you are aware of what’s happening. My mum had to have a critical operation due to an emergency related to Parkinsons 8 years ago and when she was in intensive care with all the tubes and drips etc, she said the same thing as your mum. I have cried so many times over the years at the struggle that she has had to go through and soldier on. It sounds like it has been the same for you.

You are doing all you can to help her.

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Hello again Havanas I am with you on this. I understand totally - my husband is now entering his third year at home with 24/7 care. There is no way you can fix this - your mother will need more care as domiciliary visits just don’t work - ask your Parkinson nurse for advice and support with chc funding. Also ask about doing an advance care plan if you don’t already have one.
Until you reach this stage no one can tell you how you or your mother will feel.
Yes the Parkinsons nurse is right/ generally PWP do not do well in care and do better at home, however without the right level of care and suitable accommodation this simply may not be do-
able. You can only do the best you can. This is a huge load for you to carry and whatever happens by doing your best you have nothing to reproach yourself with later.
There is no good news I’m afraid in the later stages of Parkinsons all you can do is ensure that
she is as good as she can be by fighting for good care. Yes there are some outstanding care homes if you have enough money but for most this is simply not possible for any length of time.

I regard us as being extemely fortunate in that we have been able to adapt our home for my husband and carer, I am fit and well and able to monitor and oversee his care, hospital appointments,liaise with his care team in oxford and organise visiting therapists etc . Additionally my adult children are all senior medical staff. The majority of families do not have this level of family support. Also the pwp is my husband, not a parent and so it is different for me. You have your own family who are your priority
I am sorry if this sounds so depressing but it is important to be realistic in this situation. However our home is often full of laughter with visiting family,dogs,friends and neighbours although to be honest it is always random and I insist on carers having a relaxed attitude towards life(ie don’t sweat the small stuff) but not care and meds!!
Much love to you Havanas pm me if you like for more support. xx

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Hello Yogalady
A huge thank you for taking the time to write such a full response to my post, which is comforting on so many levels. My mum’s care at the moment is a care package of x2 carers, 3 times a day.

I don’t even know if that could be increased to 24 hour care as I assume it would need to be x2 carers, 24 hours a day, which sounds a lot! I will speak to the Parkinson’s nurse. This feels like mentally trying to walk on a tightrope with disaster at every move! What feels complicated to me is that right now mum’s current package is funded, so I can’t imagine a place where they would move it to 24 hour care and my 82 year old dad to accept it. You have given me lots to consider and think about. I will give another call to the Parkinson’s nurse and try to make some progress. I may send you a direct message if that’s ok with some questions once I know the Parkinson’s nurse response and view.

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Hi there, I am in a very similar situation. My mum is even worse than your mum though, my mum is bed bound for most of the day, allowed in her chair in the afternoon, she can’t walk or even stand now so wears incontinence pants, she can’t speak very well, dribbles, can only eat puréed food and can barely move any of her limbs. It’s absolutely heartbreaking, she is 80 next month and has had Parkinson’s for 19 years. My Dad is 85 and her carer, they gave carers 4 times a day. I work part time and on all my spare days I go over to help, this is tricky especially as I have young children. It’s a tiring and stressful time. My mum has no life, neither does my Dad and I’m powerless to change the situation, all I can do is offer moral support. We are just waiting for things to worsen and deteriorate which we are told will be imminently :disappointed:

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Hello Isobel77
I hear you and am with you. Truly heartbreaking. There are a lot of similarities with the symptoms you describe and my mum’s. Even more challenging with young children too. My children know that Nanny has Parkinson’s but I had to explain more to them about the jumbled speech and what hallucinations were to them the other day. They are aged 5 and 6. I will send you a direct message for us to connect.

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Hi, just wonder where you are at with your parents. My mother lives alone and won’t accept carers. I have set up alarms, Alexa speaking reminders, pill dose boxes, have a camera and if I can speak to her at the times to take meds. In the last 3 months, she has been missing medication or taking them close together. As a reault, too frequently now, she is frozen and cannot get out of bed, wetting herself and struggles to walk for 2-3 days after.

I have decided to adapt my house. I have young kids. I am working, reduced my days but am finding it harder to cope. Hoping when with me, I can make her do her physio, ensure she takes medicine when we are in. I will also have to get carers.

Not sure what stage she is at. When meds are taken on time she can manage to walk, get out of bed and use a frame. I am worried about the impact on my family.

I have tried to contact social care to understand what help she can get but am constantly brushed off. Mum owns her own house, we have not claimed anything and now assume that we have to sell her house and pay for care for when i can no longer cope. Just feel so isolated with no guidance. It is very tough. Sorry I realise I am ranting!!! But I am sure I am not the only person struggling . Sigh . :pray:

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Hello
It is super hard. I emphathise and feel for you. I have young children too. Not sure what part of the country you are in and what the local authority offers. Having been through this, all roads start with the doctor and having a social services assessment. Your mum needs to be ready to accept the help.

If you haven’t got it already, I would speak to your mum about getting Lasting Power of Attorney and getting her agreement/ signing the paperwork whilst she is still able. This will help in the future when you need to make health decisions for your mum, so knowing her choices now is a very good thing.

My mum now has 24 hour care at home with a regular rota of carers. My dad is 84 and my mum is 82. They have come to trust the carers that they have and appreciate them very much. There will be help out there, but the first step is the social services assessment. Unfortunately, it sometimes take a near disaster for them to understand how difficult things have become. Good luck. I know how hard it is.

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Dear Mum101

I think I would go back to Social Services and insist on a care needs assessment initially.

Rather than your mother refusing carers I was wondering if you could talk to her saying you were thinking about the best way forward for you all, including you, your young family and husband. I suspect she is very scared and probably needs to know you will always be there for her and will ensure she is well looked after.

It is a big undertaking to adapt your house to enable her to live with you. We adapted the house for my husband and although I have no regrets we would not and do not expect any of our grown up children to care for either of us in this way, despite the fact they are front line NHS staff and one works in Social services.

I suspect though you feel as I do that you need to give your mother the best possible care and whatever happens you will know you did the best you could.

If you do decide to go ahead with adaptations ask for a visit from Occupational Therapy who can give invaluable advice on the best way forward an details on grants etc.

I used to work as a movement therapist for those with neurological conditions and was able to “encourage” my husband with his exercises although to be fair he was very well motivated in this regard as he was with taking his meds on time. If you decide to take this aspect of your mothers care over it can be very frustrating if she is not well motivated.

My husband has NHS funded care at home. He is described as complex within the complex phase of Parkinson’s. Although his care is described as exemplary we have had serious issues with the quality of care. I am fortunate in having grown up children to help and advocate when navigating through the frustrations of the NHS. This includes giving me the knowledge to hold my own against well intentioned although inexperienced health care staff.
I was able to find a highly rated care agency to take over the care package. They will look after him to the end and have ongoing advanced training including End ofLife care. Their training of care staff goes way beyond that offered by other agencies This type of care agency is the exception. Prior to them coming on board the level of care and particularly management and training of carers was poor. The good carers did not stay so there was no continuity of care.

I need to mention our current care agency who are very professional, run and staffed almost exclusively by Nigerians. They have come here on visas for care staff. They were trained in Nigeria prior to coming here. They are all qualified professionals in their own right but unable to find work in their own country. They have taken over all of my husbands care needs including the ordering of medication and act professionally at all times. They are very well managed and subject to spot checks.
I mention this because I seem to remember someone else on this forum having a similar experience with a Ghanaian based agency. So for anyone reading this post who is looking for care or has issues with current care this sort of agency is something to look out for.

I hope I have given you a realistic picture of what it can mean to care for someone with Parkinson’s at home especially when care is involved. When I reflect back I have no regrets but grateful for all the support I have had from friends, neighbours and family. I also think it is important for those in the final stages of Parkinson’s to be in and part of the community and for others to be aware of what this means.
If we are to increase the public awareness of Parkinson’s others need to understand it is so much more than tremor or gait festination

So mum101 I think I may have given you conflicting messages but hopefully it will enable you to seriously consider before moving forwards with your mothers care.

Much love to you and all your family