Need help with.. helping my mother

Hi AndreiV,

Thank you for reaching out to us on EnableMe and for sharing you and your mother’s journey post stroke. I am really glad you wrote and I am sure your post will resonate with many in our community. It can be hard looking after a loved one and at the same time being overwhelmed and unsure how to best support them. Despite this, you put on a brave face and keep going. You certainly display a lot of courage! Your care and kindness for her really shines through in this post. The fact that she has your support is such an important part of recovery.

It can be hard to find the best way to respond, to understand why she is exhausted or understand if she is making good progress. You sound like you are doing well by providing positive encouragement. This is always important as recovery is hard and generating positivity internally can be a battle. Hence external encouragement is good, and I genuinely think she is doing awesome!

Here are a few tips if you would like some more guidance.

Firstly I hope that you and your mother are not going through this journey alone. Has she seen her GP or a neurologist? This may be a good place to start to get an overall idea of her recovery and symptoms. Are there any other allied health professionals that are supporting her? A physiotherapist or exercise physiologist can help by creating an appropriate exercise regime, e.g. including coordination, balance and endurance exercises. An occupational therapist can also help with energy conservation techniques for her exhaustion and fatigue. It’s these professionals that can really help with information provision about how the stroke has affected her and the progress she’s making. In case you don’t have health professionals in your team, here is a guide to getting good health care- see the in home section.

Some basic ways to discuss fatigue are to let her know that it is quite common after a stroke and that she is not alone. We have a lot of stroke survivors saying that fatigue can be quite debilitating unfortunately. This is because the brain has been hurt and needs to relearn so many new things. It needs time to heal just like other parts of the body and learning can take effort and lead to fatigue. It may take a while to find out how much the body should move and how much movement is too much. Finding a nice balance can take a while.

Putting this into practice, a health professional can guide her in a program that may include increasing the amount of short bursts she does, rather than completing one lengthy session. This provides time to recover in between sessions. If the maximum distance she can walk is 20-30m, they may perhaps try to get her to do a little less than that eg 10m and perhaps a few times a day. Hence building on her amount of walking whilst not wiping her out completely.

You could also write a diary to see how the fatigue responds week to week and day by day. Include times of day, activities, food intake, rest, how refreshed she is feeling. You can then work with the health professionals to address any patterns you find. It would be good to also talk to the GP about her fatigue levels to ensure that no medication is adding to the fatigue, and that blood levels and nutrition levels are ok.

Here are a few resources that may help you out

My Stroke Journey: Did you receive a my stroke journey pack from the hospital? Here is a link to the booklet. It provides an overview of information about the stroke journey and what you may expect

EnableMe page on fatigue

EnableMe fatigue podcast

Stroke Foundation factsheet on fatigue

EnableMe page on rehabilitation

Carer’s gateway: This may be a good resource if you ever wanted to talk to someone about your situation caring for your mother. There are 6 counselling sessions that you can do through carers gateway too. Ph: 1800 422 737

Finally, we know that the most improvement happens in the first few months post stroke. However recovery is a marathon, not a sprint! People can continue to recover for years with input and work, and I can see that you are both determined to put in the effort.

I wish you all the best. If you would like to speak to us further, please don’t hesitate to call us on StrokeLine 1800 787 653 (Mon-Fri 9am-5pm AEST)

Warm regards,

Kath (StrokeLine)

Hi AndreiV

Your mum is doing so well so soon after her stroke. I know it's really tough on you at this stage of her recovery, but you sound like you are doing a wonderful job. Please remember your mum isn't going to recover from her event in a short period of time. 

The brain takes a long time to rebalance it's self. The main thing you are there for your mum. Maybe write down some short term goals which you both want to achieve. Don't aim up too high, Just make sure what you propose is achievable and realistic.

You are much better off taking things nice and slowly. I wish you and your mum all the very best. Don't ever be disheartened, the main thing is your Mum survived the stroke and the only way is forward.

Cheers Evan 

Thank you Kath and thank you Evan for your encouraging replies. My moms made huge amounts of progress until three days ago, but it all grinded to a halt when the heart symptoms she had before all of this (the same ones that caused the fibrillation that in turn caused the stroke) reappeared.

Since then, we visited a cardiologist who doubled one medication (Cordarone).. but she still has a fluctuating resting heartrate (ranging from 75bpm to 150bpm) which impedes the road to recovery from the stroke.

And yet again, I find myself not knowing what to do. The family scrambled to find answers or doctors with answers but we weren't able to find either. What we were told for sure is that the medication she's on right now takes her away from any immediate danger.. so that's a good thing.. I guess, but doesn't fix the main issue.

I know that I probably won't find any answers here, but wanted to update the thread since you guya were so kind to read and reply.

Still, if there is someone who went through the same thing or something similar or knows someone who did.. or something.. and can offer any piece of advice, no matter how small.. I would love to hear it.

Thank you again!!

Hi AndreiV,  I had a severe stroke 16 yrs ago & am left with a non-functional right side. I can walk, drive & look after my 2 terriers & a parrot my self. It took almost 2 years of hard work to gain some independence. When Doctors were investigating my stroke they found that I'd been born with a faulty Aortic heart valve & 1 yr later I had open heart surgery to replace it with a tissue valve. I was 48, non smoker & rarely drank. 

Fast forward to 2019 & the valve needed replacing again, so in May last year I had my 2nd open heart surgery. During this time an Arrhythmia was found, Atrial Fibrillation which is what I suspect your Mum has. It leaves me breathless & restricts the amount of things I can do. This is on top of the fatigue from the stroke & is very frustrating. 

You didn't mention Mums age but don't push her too much, it takes time. But do keep encouraging her. Get you GP to recommend a physio for stroke survivors,  explain your concerns to both & work with them (mainly physio) to help Mum through this maze. She might be feeling slower in general, give her time. I was an Ambulance Paramedic, we carried 2 stroke patients,  1 had a strict wife as far as exercise was concerned, 1 not strict at all.......the patient with a strict wife was walking by himself in short period & the other guy was still in his chair, unable to do anything. PS: strict doesn't mean a chair & a whip. Lol.

As far as the Arrythmia is concerned, ask your Doctor to explain a bit more or give you reading material about it. Basically it's an irregular heartbeat which can lower the amount of oxygen that is carried around the body therefore you have less energy. I'm guessing that she has been given regular appointments with the Cardio Doctor so keep them. 

Hope this has helped you & your Mum? Regards, Julie 

Hi Julie,

Thank you for the information. Honestly glad you managed to get back on your feet after being dealt such a bad hand. I hope my mom get at the same level soon. She is 66 years old.

Now, I do have a few other questions, for anyone who can offer some assistance or advice.

My mom started having vertigo symptoms again. It's been 3 days now. For a week after being discharged, she had none of these. We talked on the phone with the neurologist and he said to call on Monday and depending on how things are, he may want to see her for a consult. Mom's already on a medication for vertigo and I read and was told that some episodes of vertigo might persist before getting totally manageable. My questions are:

1. Is it normal for the vertigo to start again after a week of no vertigo?

2. If this is normal after a stroke in the cerebellum, how long does an episode like this last? I usually think of an episode lasting from a few seconds to a few minutes or hours. In rare cases days. But it's been three days now.. and no sign of subsiding. 

3. Is there anything I can do, anything I can have her do (She is willing. She says if the vertigo wouldn't be there she would feel great)?

4. As I mentioned above, she does have some lasting hear rate issues and the vertigo reappeared at the same time with the increased bpm's. Could the vertigo be a symtom from these rather than an effect from the stroke?

5. Are there good medications to make the vertigo at least manageable? Not planing on prescribing anything myself, just want to know what to inquire about on the next consult. 

6. Could the fact that her vertigo totally subsided when hospitalized and a week after, mean that the medication they gave her there was more effective than what she was prescribed afterwards? 

These are my top pressing questions..

I truly appreciate what you are doing here.. a huge thanks!

Hi AndreiV, 

Thank you for your message.

Guess what? Yes I've got vertigo as well. It didn't start immediately after my stroke but at first, it was almost continuous. I went to my trusted GP & he prescribed medication, can't remember name now. It helped but didn't stop it & the cause was/has never been discovered, which I believe is normal. I moved after a few years & the vertigo came with me. I again saw my new GP, the dosage was increased (a few times) then a different drug called Serc was prescribed which helped more than first prescription.

But I still had bad attacks so GP sent me to a Specialist on vertigo who did tests where I lay down quickly to 1side then the other, etc. He gave me a very long name for the type of vertigo, explained what was happening, gave me pamphlets & 2 exercises to do even if you felt worse at first.

My advice is to see your GP & get sent to a Specialist or a Physiotherapist who specializes in stroke exercises. Please don't buy any tablets because it might interfere with other more important medication. Mum get better it all takes time.

All the best, Julie 

Hi AndreiV

It's Gail from AT Chat here; I wanted to thank you for sharing your story which highlights for me the impact a stroke can have on not just the individual but also on those that love them.  It's great to read the support and suggestions posted here and thought I would let you know about a resource that might help you and your mum manage tasks safely around the house.  

The Making Choices Finding Solutions Guide - A guide for your safety, independence and wellbeing,  brings together information about how you can adapt your surroundings using simple assistive technology (equipment and aids), and basic home modification solutions to help you around the house.  It includes some great advice around how to plan, prepare and pace yourself helping to make every day tasks easier to do. 

I hope this is helpful and wish you and your mum all the very best in her recovery; you've got this!