My dear mum had a severe stroke 6 weeks ago. From being very active and capable for her age (late 80s) she now has severe aphasia and right sided paralysis. It's been devastating for the whole family and exacerbated by restrictions around covid. We haven't seen her for a month now. To top it all she caught Covid in hospital - thankfully she's been sympton free and is now just beyond the 14 day window since she tested positive. Not sure what I'm seeking from here but am feeling completely overwhelmed and grieving for the mum I feel I've lost. Hospital / therapists have been wonderful but are suggesting she may not recover any further. She's made very small steps in rehab. I realise stroke recovery can continue weeks and months afterwards but the future feels so bleak right now. Would appreciate hearing about other people's experiences. I know I need to stay strong for mum and will do all I can for her once she's home. Thanks for reading.
Dear Fiona,
I can relate to how you feel. My mum had a stroke in October.She was on oxygen for over two weeks,tube feeding,left side paralysis,dysphagia and dysarthria. Doctors told us she MAY recover! Mum is now doing her rehabilitation at home. She can now swallow,her speech is becoming clearer,slight movement on her left side.My point is she is making progress even though the medical team said "May". Stroke survivors continue to make progress.You said mum made a lil progress in rehab.Is she still in rehab?
Stay strong for mum.Eveyone's recovery is different.Encourage mum to continue her rehabilitation."May recover can't be will recover ".
Hi Fionacraik-I had a stroke 2 1/2 years ago when I was 74. My left side was totally paralyzed. I was in ICU for 2 days. Then I was moved to a stroke reahab hospital-best thing that ever happened to me. They worked with me every day 3 times a day, occupational and physical therapy. After three weeks I could move enough to go home. Physical thereapy 2 times a week for 4 months, then continued to work at it a home until the present. Don't let them tell you someone can't get better. It's been hard work, hasn't been easy and I have my supportive husband helping and encouraging me all the time. At first I had rails for the toilet and a transfer seat for the tub and hubby stayed nearby to be sure I was safe. But it was only a short time before I could be on my own. Now I walk about 1 1/3 miles a day, do most of the housework i used to and garden. I do tire easily and have to pace myself. I asked a friend who had had a stroke when I would "feel like myself". She said it took her 4 years. Healing doesn't stop at a certain point. Only if you stop trying. The brain rewires itself. Also I saw a cardiologist and neurologist. From wearing a heart monitor it was found i had afib(which i never felt), so I was put on med. for that and blood thinners as extra precaution- to prevent any future strokes. I don't know your mom's condition, but keep positive and pursue healing. It can only get better. You and your mom will be in my prayers tonight. Love, Jeanne
Dear Jeanne, thank you for replying. Well done on the amazing recovery you've made so far - I'm sure it can't have been easy for you but you sound very determined so keep up the good work. Mum is also strong willed and has shown that already but she's in her late eighties and I fear this is just too much for her. She's still receiving physio (was moved to a smaller hospital due to covid) but was deemed ineligible for rehab centre as she wouldn't 'fit the criteria'. Resources, money etc - no real surprise to us. So plan is she'll be home in 2 weeks and we'll get extra physio organised on top of community based one. Mum has AF too. She's always been a believer in faith healing so we are in regular contact with a Healing centre. Hoping once mum can be with the family that she will make further progress - that's been the hardest most frustrating part.
Your journey is inspiring Jeanne and has uplifted me so thank you. xx
Dear Fiona
So sorry to hear that a stroke has got your Mum.
It is a truly awful thing to be recovering whilst everything is covid closed.
Every stroke is different. Mathematical impossibility for two strokes to be the same.
The medical staff are obliged to tell you a worse scenario.
If Mum is a strong character then recovery will happen. I am five years and still recovering.
A good thing about no visiting is that the patient needs endless rest and sleep. And the staff can concentrate on the patient.
A good thing about being kept in hospital is that physios etc are to hand, whereas once discharged there is precious little support and, whilst covid rages, there is just about no support.
My aphasia was pretty much improved within six months. I was left sided paralysed but after just a few days I got up and walked. I am boasting, but want to highlight that recovery can come when least expected.
By all means grieve for the Mum you have lost. I know I am a different person, the stroke does that. And my memory is bad. I am still realizing just how much has been wiped from my memory banks. But there is an awful lot of me still functioning.
Do think about what Mum can do and not what she can not.
Bless Mum and her family
Colin
Fiona, very sorry to hear about your mum. The earliest days are always the worst. Many of us survivors were floored by our strokes and unable to move. The brain,however, is wonderful and will start to re-route itself. As Colin says, mum will have to draw on all her grit and determination. But please encourage her all you can.
Recovery is slow and often imperfect. I now describe myself as partly disabled, but I can cook and bake, I can dress, undress and shower myself. Walking is a bit slow and I need a stick, but I can walk. Life is not what it was but I am still alive, although not quite kicking.
my thoughts are with you.
Thanks so much for replying John. I'm glad to hear you're recovering and making good progress. The brain is amazing and mum has always been strong willed - she has already shown this. I fear for her state of mind though particularly as she's had no familiar faces around her. Her level of comprehension is unclear but she did apparently have tears running down her face when we spoke to her on Xmas day. The nurse seemed convinced mum understood some things. We are always praising her on the phone and will certainly continue to encourage her once she's home.
Hi Colin, thanks so much for your message. So glad to hear you're recovering so well but also good to understand there are limitations to this and that people aren't always the same again after suffering a stroke.
Mum is very strong willed and I feel this is already evident from the updates we receive. I worry about her state of mind though but at the moment we can only just keep encouraging her on the phone and hope she understands enough to know we are there for her at a distance until she comes home. Thank you for your wise words, much appreciated.
Dear Lsly
I'm so sorry you've been through such a difficult time with your mum too. So glad she's making progress though and I sincerely hope that continues. My mum's always been a fighter, (sounds like your mum is as well), and I'm hoping once she's home will continue with her recovery aided by having the family around her.
Mum is still having physio in hospital, and will continue with the community physio once home. It will be a steep learning curve for us all but I feel encouraged by the stories I've read on here including your mum's. Thank you for sharing.
Dear Fiona,
Stay strong for mum. She's got this!?.
Just wanted to thank you all for your support and invaluable advice so far. Also to update you on my mum's situation. She is due home this week - bit of a frustrating wait for the care package to be put in place but understandable given the strain on resources right now.
Mum can say a few more words but this is patchy and dependent on how her day has been. She's indicated she wants to come home - hospitals aren't the best places for the much needed peace & quiet. The nurses have been brilliant & we know she's in good hands.
The family are coping in different ways. My anxiety levels & sleep have been awful. Aside from the heartbreak of what's happened to mum, I'm also sad how it's affected the family dynamics. Mum was / is the central force in our family & I feel things will never be the same again. It will be a steep learning curve once she's home but will also be good to spend time with her after nearly 2 months without seeing her.
Fiona. Despite the difficulties of the present and all your worries, to us likely mum will improve more at home. Although hospitals are wonderful, it is difficult to sleep away from the home environment and the loving support of family. It s also likely that home surroundings are more stimulating.
After my big stroke five years ago, I was desperate to come home. Once there, things were difficult at first but, bit by bit, improvement came. From being on a frame and sometimes needing to be pushed around in a wheelchair, I now walk outside with a stick but never use my stick indoors. I can't do all the things I could, but I do as much as I can. It took me a long time to peel a potato again, but I can now.
Try to think of all the things that might help mum eg cutlery, a tray for the disabled, easy access to crocks etc. When I came home I treated myself to a hand whisk,a food processor and an iPad. Also be aware that mum may try things and fail, drop things and even fall occasionally. Post stroke fatigue is an after effects of stroke and she must rest and sleep when she needs to.
Recovery is very slow and seeing a 'different' mum will be hard at first, but encourage her all you can. I wish her all the best.
Gosh we sound pretty much the same. My Mum (77) had a stroke 6 weeks ago also, was told didnt think she'd survive after very severe bleed to the brain, totally fit and healthy prior to this. Shes still in hospital and again caught covd though has just tested negative and after a battle Ive eventually got them to agree for her to return to the stroke unit but not sure how long. I have been thinking about where she will go upon discharge, home, nursing home, live-in carers or to me. We have now decided she will come home to us and then look at building a granny annexe at the bottom of our garden if she is capable of that and I will look after her along with carers. I work full time so will look at reducing to 3/4 days and carers remainder of the time. I also havent seen her since xmas day and its so frustrating and upsetting. I feel lots of pressure and dont know where to turn especially being an only child. I will await her care assessment followed by her financial assessment to see what help we can get. Like you say we have lost the Mums we had and is so overwhelming and like you not sleeping and just consumed with my Mum's illness and her ongoing care. I also have my daughter and 3.5 year old granddaughter living with me so its pretty full on and worried I wont be able to cope with the addition of caring for my Mum but really dont want to put her in a nursing home. Wishing you all the best