My mum suffered a bleed on the brain just over 2 months ago and whilst in hospital suffered from multiple chest infections holding her progress back. She then suffered a stroke as well and has just been discharged from hospital to a nursing home. She is unable to swallow fully so has been fitted with a peg into her stomach, she has a small amount of movement in her arms, she very rarely speaks and when she does it is generally yes or no. Some visits with her are good and she seems alert and possibly that she knows who I am and other days she barely acknowledges me being there. We were told when she was discharged that the doctors felt that she was unlikely to make any more progress which was heartbreaking to hear. It feels as though they had just given up on her. I know we are lucky that she is still alive but I feel that I have lost my mum. Finding it difficult to process the whole situation and my emotions are all over the place.
Hi Hayley, I know exactly how you are feeling. My mum also had a stroke a few months ago during emergency open heart surgery, which has left her with severe cognitive, memory and vision problems. She is still in a stroke rehab hospital but like your mum will probably be discharged into a nursing home as she will never be able to live independently again. She is alert and can speak but doesn't seem to have any short term memory or any memory at all. I'm struggling to let go of the hope that she might improve and suddenly 'come back' to us but I know that's unrealistic. Deep down she is still mum, as is yours, even if she's not expressing herself in the same way. I don't know if you're religious at all but a good friend of mine who is also a hospital chaplain had these kind words of advice which I am passing on to you, in case they may be of help:
Be compassionate and kind with your mother, approaching her with humility, gentleness, patience, forgiveness, and love – it could be a long haul and truly test you.
·Hold on to the energy that you always have and give space for peace in amongst all of the activities that you undertake. This will take some self-control as it is easier to be busy and purposeful than just simply being present.
·Take time for rest, exercise, reflection, refreshment (could even be a second glass of wine), and to reenergise – it will ease the burden and stress. This will give you the reserves and extra patience to be able to handle things that you will face moving forward.
·Be careful not to lose your joy of life, humour, and ability to laugh with others. Your smile may mean more to her than any words.
·Be slow to anger, even in moments of great frustration, as others are well meaning and strive to do their best (even when they seem incompetent or uncaring). You may want to reach out for informed support (as you are doing here!)
·Be comforted that your mother has great care and attention from you. Share the burden of care with others, much of her future is out of your hands. I always like the Woody Allen quote, “if you want to make God laugh, tell him about your plans”.
·Be thankful for being trusted with the role of caring for your mother.
all best RosP
Dear RosP and Hayley
sorry to hear about your Mums tragic strokes.
please have in mind that every stroke is different. And once in a while amazing recoveries do happen. Never give up.
Recovery will not be a sudden return. It will be a spark of inspiration coming from within Mum. Followed by a very slow and very long recovery. Months and years not days and weeks.
For me, the early days were difficult, because my brain wanted to concentrate on getting my paralysed body to move. My brain could not cope with conversation. I got my wife to sit, read, go for coffee etc but not make conversation.
I did recover. My speech became passable after three months. My paralysis left me and i walked. The help of others, including those who prayed for me, is great, but it was down to me to make the effort to recover. Nobody can do the effort for us, it has to come from within.
My memory was partially wiped. Luckily i keep a diary so i could read about what i was doing before stroke. My short term memory is rubbish, but its not totally hopeless. And i am not the same person as before.
For many many months i needed to rest. And then rest some more.
only another SS understands. But perhaps you can accept where Mum(s) is currently going.
colin
Thank you for sharing those kind words - I've copied them so that I can refer back to them, as I know this post will soon disappear into parts of this site I'll never find again!!
Best wishes to you, and Hayley88, and your mums ?
Hi, just want to thank you for sharing those words with me. They have definitely given me something to think about. It is such an awful situation to have to go through and I feel so bad for mum having gone through so much in the last few months and to end up being unable to do anything for herself. But I know that we have to be thankful that she is still with us and appreciate the good days we have with her. Having hope had been keeping me positive but hearing the drs say she had no rehab potential I feel that my sense of hope has been put out. I hope that your mum can continue to make some improvements.
Thanks Colin. It's very reassuring to hear from someone who has been through the experience of a stroke and can give some hope. There's a natural inclination not to have unrealistic expectations just to have them dashed. It's such an emotional rollercoaster! But actually 2 months is still really early in the process and I have to remind myself to be patient. Mum sleeps a lot of the day so her body is still obviously needing a lot of healing. Thanks again for sharing your experience of the slow road to recovery. ?
I'm really sorry to hear about your mum but please do not give up even on the darkest days. It is a long long journey and an emotional rollercoaster ride. My mum had a very bad stroke in April last year and was in rehabilitation for 4 months with limited speech and no mobility. She is now improving fantastically on her speech and can stand up aided for short periods of time. Sometimes she says and does things which I don't totally understand but have got to accept mum is still mum just in a different way. Stay strong and positive and sending best wishes.
Thank you for sharing your experience. I really hope that my mum can make some progress. Its very difficult to accept that this is just how life is now. When I talk about it, it feels like I am talking about someone else and then it's like a have a flash back and remember that this has happened.
I hope that your mum continues to improve.
Thank you Hayley and yes that's exactly how I feel a lot of the time as we remember them how they used to be. Please keep us updated on your mum keeping everything crossed for her.
Feel like I am struggling a bit today. Had a visit with mum on Saturday and she wasn't doing too well. She had, had a difficult night as she had been struggling to deal with her saliva and had to have alot of suctioning done to keep her comfortable. That meant she was extra tired when I saw her and wasn't very alert at all. I know she needs her sleep but its so difficult to see. Now I feel terrified that something will happen to her during lockdown or that she might wonder where we are when we can't visit. I miss her so much, I know I should be grateful of what I have and that she is still with us and try to enjoy life but some days I can't seem to see the positives. I just want to be able to hug my mum.
Hi Hayley. I'm sorry to hear your Mum isn't too good at the moment. It's really hard to cope with lockdown as well as trying to be there for your Mum. I had a similar time with my brother who died of cancer during lockdown. Cancer patients seem to have been forgotten amoungst the Covid pandemic.
The hospital staff will assure your Mum about the situation and she will know that it's not your fault. I know there is much talk of facetime and other technology but some people just don't feel comfortable with it. I know I'm not a fan of talking via a video camera. How does your Mum feel about technology?
Do you have a teddybear you could give to her so she can have this with her to keep her company during this time? Just a thought. My thoughts are with you - try and stay strong and keep your chin up. x
Unfortunately I don't think that facetiming would be beneficial for mum she really needs that physical interaction with someone holding her hand due to the effects of her stroke. Im hoping that the home will allow someone to visit but will have to see what they decide.
Sorry to hear about your brother, that must have been difficult for you. Yes it does seem that cancer patients have been forgotten. Covid has just made difficult situations even harder.
I agree - there is nothing that compares with physical touching, holding hands and cuddling and the reassurance that this gives much better than any technology. I heard something on the news yesterday that there is a growing backlash from MP's that not allowing care home visiting and both parents to visit sick children in hospital during lockdown is now deemed a violation of human rights and this is going to be looked into to see if there can be a change in the law to allow this to happen. Let's hope this happens quickly for you.
Luckily the home hasn't stopped visitors yet I was expecting them to stop visitors as soon as the government announced the lockdown but nothing has been said about it yet. Fingers crossed things stay as they are.