Today it’s 6 years since I came to care for my mother with PD. I’ve learnt a lot about myself and even more about how to help mother … but for a 24/7 carer who’s there for ME?
I’ve been screaming for ages … don’t mention family or friends - they ‘get busy’ soon as they think we might need them!
Anyone got any good ideas? I’m so lonely I feel like I’m the only one on the planet right now.
Mum has had PD for over 30 years now. Dad was main carer until he died in 2017 and I took over from 2012, overlapping and caring for them both for a time. Gradually I found God, became very patient and learnt many things about myself … took up hobbies I’d long ‘let go’ … but as a retired person I figured I owed myself that much at least.
Not so. I’m housebound too. We have everything delivered. I don’t like moaning and groaning but is anyone as lonely? What do you do?
I feel like talking to others is an impudence because why should I inflict them with my problems … but sometimes I can feel my head really hurting with my screaming … but it’s soundless …
I’m so sorry you feel this way, it can’t be easy being the sole carer for your mum and although you’re doing an admirable job, it’s okay to admit that you need support. @Jules47 is right, I think you should get in touch with social services so they can explore the different types of help available to you and your mum.
We understand that caring for someone with Parkinson’s can be challenging, however, you are not alone and it may help to connect with other carers via a local group, our Facebook page or you can speak our Parkinson’s local adviser. We have more information on these options via our website here - https://www.parkinsons.org.uk/information-and-support/looking-after-yourself-when-youre-carer.
Of course our helpline is always here if you need someone to speak to, please give us a call on 0808 800 0303.
Thank you Reah.
I’ve tried most things…but social services is out for the time being as mother becomes insecure and her neuro problems increase so much that I don’t have the heart to push her. She becomes quite ill with the worry and challenges me even more by bringing up deeply insecure emotional stuff which we’d both rather forget now.
I also ring up occasionally etc. but how many times can the same person keep on to others who have their own problems and lives with challenges to meet?
It goes up and down … of course it does.
And tomorrow I’m going to try the link you posted. Thanks for that.
X
It’s a real shame that your mum feels that way towards social services as there could be options available to benefit you both, but I also understand you not wanting to push her on her decision.
However, your emotional well-being is still important and shouldn’t be overlooked so as well as my suggest above, you may also want to consider counselling to speak to a trained therapist about what you’re going through. More information on all types of counselling and therapists is available from the British Association Changes and Psychotherapy.
Lastly, you can call our helpline as many times as you need, we’re always happy to provide people like yourself with the support you need.
Its a crying shame how we the people can get into this position above when the money exists for everybody to have more options. I saw this inequality as an RN before my diagnosis of PD. Im still pretty good ten years on, I drive, shop, go to the gym, do boxing, maintain the house, chill, socialize, do the web and thats where one can find out so much. Screaming does help, I find, but when you see how corrupted our system is its a cold determination that settles in rather than hot passion. Its awful to say this but the only way to deal with our predestined mortality and our dysfunctional world is a bigger picture view. Faith even. Im not religious however. Im talking about a deep deep acceptance.
There is constant ‘‘movement’’ with PD patients. The disease puts pressure on us all and occasionally so much pressure that it’s easy to crumple up in a heap and cry - or scream as in my case.
The frustration is almost unbearable sometimes. However, I AM a believer. And it is my faith and belief that has brought me this far. On those occasions when I’ve been pulled through the thorny hedge by my poor mother’s PD symptoms (there seem to be so many these days) I must have prayed until I was hoarse … and then some.
Just last night I slept, but how much good did it do me? I must have continued my prayers in my sleep because unlike most other mornings when I wake after a fitful night, today I seemed more ‘‘awake’’, more ‘‘aware’’, and definitely more love flowed through me towards my mother.
I was able to define, again, that she was greatly loved (she feels insecure about that). That I was going through the whole time with her … however long that takes. And to urge her to think more about understanding her situation, symptoms, and coming to terms with them rather than trying to do things ‘‘like she did in her younger days’’.
Her understanding of herself will go a long way to help me, her daughter and carer, because then she won’t be so full of her inabilities and more full up with ways that she can continue to be the matriarch and much loved mum/grandmum to her family, who still need her very much, emotionally.
Interesting to read your journey ‘at the end of yourself’. I too have a deep and practical faith, despite which, I needed 5 years of anti depressants as support after my husband’s diagnosis with PD. Do consider talking to the medics about how you feel. It does not mean your faith is not valid. It means you love your Mum. Your anxiety, soul pain and grief over the changes - which of course go on and on over each step-down in her ability, are hard to process and the mind, spirit and body all react accordingly. Stress and anxiety and grief all create changes which can need some chemical support sometimes. My God is gracious, loving, and the Holy Spirit strengthens, yet on a practical level I have learned that when calling on Him for everything I need, this may include use of daily relaxation techniques, organising treats for myself (a Swedish massage for relaxation once a month), mindfulness moments, and a touch of counselling now and then, are things that I need. Look up The Association of Christian Counsellors. Having counselling does not mean you are not strong, or that you are a failure - indeed, it means you ARE strong, with great insight, and a dynamic approach to sorting things out- giving yourself what you need so you can care for your lovely Mum.
Thank you dinky. I’m away to get some stuff organised for myself.
Your insightful ‘letter’ to me is full of love, hope and who our God is.
Thank you so very much for your help.
I hesitate to suggest this as it is so easy to misunderstand, but if you really do feel alone and there is no-one to talk to you might want to try calling The Samaritans. You do not have to be suicidal to contact them, which many think, they are there for anyone in need. They listen, they do not judge and they are there 24/7. Times can be hardest evenings, nights, weekends and high days and holidays when most voluntary and statutory services are not available - the very times that emphasise your loneliness. The Samaritans can fill that void. It might be something to keep in mind, an extra pressure relieving valve if you like or even an avenue to explore just to see if they could offer something that may help. I make this suggestion simply as another option which may help, nothing more. Whether or not you explore this further or disregard it is entirely up to you. I wish you well.
Thank you Tot. Yes, I know of these people but have never tried them. Perhaps next time I’m feeling desperate for company and help I’ll do so.
It has come to the time when things might change for me … my poor dear mother might not last much longer … and I’m ever aware of that side of life too …
I’ll bear this in mind. I’ll also remember The Samaritans after mother has gone in case I can maybe help someone else one day.
I’m grateful to you for your suggestion and for writing.
God bless.
X
I was saddened to hear your news of your mother but also glad you have this time, knowing her final journey is not far away. It is a special time and however hard or easy it may. be I hope ultimately that you can be at peace knowing you have done your best by her because clearly you have. I have no doubt somewhere deep inside your mother knows that.
If I may take something of a liberty here coming in late as it were - some time ago I wrote a poem. for a close friend whose husband was in the final stages of cancer. It struck as chord with her. Your circumstances are different but I would like to post it for you, not to suggest I am a great poet but because it was written with honesty and came from my heart to my good friend. I don’t know you and I don’t want to force it on you but for some reason I can’t explain I would like to give you an opportunity to see it if you wish. I thought I would post it in the creative corner that way you can read it if and when you wish or not read it at all. I will send a note so you know it’s up, then it is up to you. You will be in my thoughts, my best wishes to you both
Thank you dear Tot. I found the poem and I have enlarged it and moved it onto my board so that I can read it often. It says all that I anticipate will be forthcoming and offers me hope too…
Yes, after all the difficulties will come the peace of release for Mum but for me ‘I’ll feel the colours bright again one day’.
Thank you so much for the poem. Its absolutely lovely and very comforting.
It also made me realise how caring and kind you are…and I thank you for sharing this with me.
XX
I’m a 24/7 carer for a friend who has a wonderful and caring family but they are genuinely very busy and not local. My friend and I both share a deep and comforting faith and have a wonderful church family around us. But the loneliness and feeling of isolation is never far away.
I realise this isn’t very comforting, but I just wanted you to know that although you feel very alone and restricted, this time will pass. I find friends don’t always understand and their suggestions put me under pressure as my friend is very anxious and often confused and insecure. But this will pass and I am convinced that loving and caring for my friend, during this horrid time, is a good thing. I find new grace each day, and often lose the plot on others, but I’m comforted by Ps 23. I’m just passing through the valley of the shadow, but the sun is still there and I will feel it’s warmth again, maybe not today, but soon. Be blessed in your service.
Screaming helped my voice return, I dread to think what the neighbours thought. God did I scream, good job in the bathroom otherwise I think I would have been sectioned for disruption to the neighbourhood, eg breech of the peace, funny now but at the time I reallllllly did give it some. If my voice starts to wobble again, I will defiantly scream my head off, it works… give it a go in a safe place and prepare those near you, it really does work. Seek medical opinion though first, I’m no doctor just someone living with it, big hug
I feel what you are going through is me too .My partner of 29 years has been in hospital now for 7weeks He has P.D and was diagnosed in 2017 .the signs were showing ages before until he saw Neurologist.
He had joined local Jim at day centre and was doing really well to keep fit .He had a few falls and this did not help .The last fall was at home 19th March 2019 .paramedics came and helped him up .sat him a chair and did the health checks all was fine .Paramedic helped him to stand to help him go upstairs to bed He then collapsed out cold I thought he was dead hehe was rushed to local hospital where he remains.he is not himself and has confusion and worrying a bit .i feel like the person I have been with all this time has gone this I am finding hard to deal with and it is breaking my heart to see him he is like in a bubble and he is confused and seeing things that are not there .i like you want to scream out loud but what will it do it feels like a bereavement and this I find hard ,I have loads of friends who have helped me and visited the hospital but when I come home the house is so empty and I at at a loss how do I deal with this to keep strong any advice gladly received.i am normally happy go lucky guy but there is a void in my life .We have a family meeting today at the hospital to see what is next for him . So I do feel like yourself .
klb I am deeply grateful for your comments. Yes, I do understand the restrictions of kind words and critical remarks from both friends and family but quite honestly I am finding it very difficult to ‘‘come back’’ from these remarks. There have been one too many for my liking, perhaps, and given Mum’s difficult mood swings and attitude towards me anyway I’m wondering whether ‘‘this time will pass’’ quickly enough … negative thoughts and actions are not usually my thing and I’m struggling at the moment with extreme tiredness, frustration and yes, irritability too. I’m trying not to display these feelings to Mum but that’s also hard as she moans all the time; about the food, about being depressed, about not enough company, about just about everything. Yet she is one of the lucky ones I think because she can still do so much herself. Walking, dressing, toilet to name but a few. She now calls me her own pet robot.
Sigh…
