My dad is six weeks post stroke and was doing so well, maybe too well, he has had 4 very bad flat days where he can hardly do anything. Is this normal?

Hi Lynne,

Thank you for reaching out to us on enableme.

A stroke is a life changing event and many survivors will experience a range of emotions and physical changes. These emotions may shift and change throughout recovery. It isn’t abnormal to experience ups and downs during recovery for a number of reasons.

Mood changes are common after a stroke and your dad may be feeling frightened or anxious about his stroke or the future of his recovery. Depression is most common in the first year after a stroke, however it can happen at any time. This might look like a loss of interest in things, lack of energy, difficulty sleeping, or sleeping more than usual. These symptoms generally last more than a few weeks. The more severe your stroke, the more you are at risk. Have you or your dad spoken to someone from the stroke team or his doctor about how he is feeling at the moment? Is your dad able to talk to you or other loved ones about how he is feeling? Monitoring his mood will be important so that the best treatment and support is provided.

You might find our ‘depression and anxiety’ resource page helpful.

We also have a fact sheet about ‘depression and anxiety after stroke.

Fatigue is also common after stroke. It can cause feelings of tiredness and lack of energy that is generally not improved by rest. Do you think your dad is experiencing fatigue?

The cause of fatigue after stroke is unclear, however there is a theory that cognitive, physical and sensory changes mean that many things require more effort. Fatigue can affect all areas of a survivor’s life, including their ability to participate in rehabilitation. For some survivors, fatigue may improve over time whilst for others it can persist and be debilitating.

There are ways fatigue can be managed and if this is something he is experiencing I would encourage you to speak to your dads treating team to help reduce the impact upon his recovery. Here is a link to our EnableMe ‘Fatigue’ resource page. We also have a fact sheet and podcast on this topic you can locate underneath.

Recovery after stroke is an ongoing process. Whilst many stroke survivors make good gains and improvements within the first initial months, recovery is not limited to this time period and can continue for many years ahead.

Life as a carer can be challenging. It’s important to take good care of yourself and reach out for support if you need. Here are some carer resources you might find helpful.

We have a free helpline staffed by health professionals who can provide you and your dad with the information, advice and support you need. You can contact StrokeLine on 1800 787 653.

Best wishes,

Jade and Simone (StrokeLine)

Hi Lynne,

Here are some more comments from Facebook.

Linda Worrall There are things you can do to prevent low mood. Understanding the effects of stroke is one, practising positive psychology strategies such as listing 3 positive things that happened that day, being shown the progress that has been made, social contact etc...all are good healthy behaviours anyway.

Charlotte Munro It might be worth seeing if he will talk to someone about perhaps being depressed. It’s way more common after strokes than people think.

Steve Bolton Normal? yes and no. Not uncommon is maybe more accurate. Its not as simple as saying its "depression". The brain is so misunderstood and it controls everything about us. Every brain injury, whether from stroke, disease or injury damages parts to differing degrees also as healing occurs and neuroplasticity retrains areas of the brain more changes in the person become apparent. What the sufferer was like before the injury is different from what they are after plus what they are like today is different from what they will be like tomorrow and next week, year etc. Along the way some things can become miswired in the brain as it works things out. I would burst into tears at moments of laughter. Depending on the injury extend the changes may be subtle or drastic as the brain relearns. I found myself craving the company of people I liked and trusted and felt these were good people to relearn from. Prior to brain injury we aren't aware of how much work the brain constantly does until it stops doing it and you have to consciously control the body in various ways to make up for it. Its especially unapparrent how much energy the brain requires to function which is a new form of fatigue beyond feeling tired after a jog. Sometimes the fatigue for me is so great i basically shut down for several days similar to your description. There may be depression involved or not. I also find those days its not good to do anything as the brain and body just needs time to recover and doing anything at all require energy prolonging the "down time". So I find its best to go with it, stay in bed and sleep until the body wants to get up. Living with brain injury is about recognising the habits that are burning energy the brain requires and maybe cutting down some activities toconserve energy in the long run.Your dad may be doing too well? Sound like he's made progress and has been hard at exercising it. I was the same when I started to get on my feet out of the wheelchair I took every chance i could to do so and work at it, scared of losing the gain and being stuck in the chair. I eventually started to suffer strain injuries from overdoing things. The key is to accept its ok and even necessary to take a rest or even nap regularly as part of the exercise regime to allow the brain to sort itself out and the body to recover lost energy. Could be better to do several small exercise sessions in the day instead of pushing for one long one. Recovery needs change daily, like a delicate balancing act it requires constant adjustments to keep going. Think marathon, not sprint. Requiring and taking rest breaks is a requirement to progress, not a sign of slacking off. Sound like he and you need to work on the balance and accept the constant changes, good and bad as just part of the process. Dont overreact to every change as a sign its something more sinister. But also be sensible and talk with your doctor about it, though they may think its something its not too

Mark Garner I am a stroke survivor , 11 years in June. I suffered an ischaemic stroke in my sleep, lucky to wake up. People don't understand how it affects people in different ways. My only advice is to keep fighting, the mind can be very powerful in your recovery..

Shelagh Brennand Lynne..it’s great that you have reached out through Enableme and the Stroke Foundation. I don’t know how old your dad is but I run a small group of young stroke survivors (under 65) here on the Sunshine Coast of QLD
Living Life After Stroke - Caloundra Young Stroke Survivors Support Group
and ‘feeling flat’ comes and goes through all stages of recovery. I’m almost 6 years and although I suffered from depression within the first three months (maybe something to look out for in your dad), I’m relatively good now. I have a few ‘flat’ days but usually attributed to overdoing it physically or mentally. Fatigue is still a big issue for me but has got better in time. Two and a half weeks is so early in your dads recovery and no doubt he will be feeling overwhelmed with his situation and still grieving for the person he was. It takes time and just know day by day, week by week, month by month is what it takes. He will be ok with your support. Perhaps allow him to focus on what he CAN do and something that makes him happy, if he’s able. Good luck and let us know how he goes.
I run a FB page A Stroke of Poetry which shares my life, ups and downs and my role as a Stroke Safe Ambassador if you want to hop on or pm me anytime. Much love
Shelagh

Shana Young For me helping Gran, it's two steps forward four steps back. Somedays it 90% normal energy/brain function then 4 days recovery from being so tired and anxious.
Rest your body x

Maureen Lisa Fatigue and brain tiredness are two very new things that your Dad will be learning to cope with. Six weeks is not very long. It might seem it but it’s really not. I’m nearly 9 years along & I still get brain tired. The fatigue still hits at times and that’s when a day at home is needed. All I might do is get dressed.

Take each day as it comes. If he needs to rest, then he needs to rest. When he feels able to do more, it’s a bonus. But listening to what his body is telling him is always best.

Vicky Haitas Yes. My dad had his stroke 5 years ago and he still naps during the day. The brain has just gone through major shock. It needs time.

Anna Wilkinson I felt invincible and strong early on but a few weeks in it felt like one step forward two steps back. Fatigue really influenced it and I compared my progress speed to expectations - as well as learning my boundaries and my limits xx it’s a journey that you find out more about you as you progress xx head up and focus on what you are progressing towards xx and learn to loveWa the new version of him xxx good luck and love as its as hard for the carer xx

Beth Pustavrh Just keep an eye on him. My dad had a stroke about 3 years ago and some days I have to remind him to take his medication. He still has bad and good days. My husband and I moved to Canberra so my mum and dad could live with us. You'll all be fine xx

Faith J. Humphries 2 years plus for me. Now I am learning to pace myself. Spent the first 18 months sleeping. Would love to do more but fatigue wears me down so I need to pace my activities & allow myself to rest. I use to always be at full throttle but no more

Teresà Ward Hi Lynne my name is Teresa. I run a stroke and carers group in Nowra. My husband had a massive stroke in 2006. Some days are very hard for him and myself but we found asking lots of questions, positive thinking, lots of patience and taking one day at a time. Maybe there is a support group near you. If you would like some more information you can message me if I can help. Teresa

Julie Richardson 15 years ago I had a brain haemorrhage. It took more than a month before I could comprehend anything that was going on around me. Recovery takes a long time, depending obviously on how much damage is done to the brain. When I finely came to I was devastated what the stroke had taken away from me. Lots of fear, memory loss, speech problems. You will need lots of patience with your dad through this time. Obtaining stroke knowledge is important, reading material, contact with other stroke survivors, there maybe a stroke recovery group in your area, if you would like more information and help contact Stroke Association of Victoria, they would send you a list of groups and literature to have a look at. You have taken the first step, all the best to you and your dad.

JohnandMargie Maher John here. Just from my own experience, now two+ years post, constant tiredness in the early stage was one of the after effects I found most difficult, although it has improved a lot since.
VIP: don’t let it get you or your Dad down. Look up some of the excellent fact sheets put on the internet by the Stroke Foundation. I know they helped
me to understand why I felt that way.
Stay strong

Helen Stibbs When did he get out of hospital? What you describe sounds quite normal but not enough information. My stroke was many decades ago but I still remember the feeling of exhilaration at getting out of hospital and finally going home after almost 6 weeks after my stroke. I did well initially then certainly had many "flat" periods. I think once the realisation sets in that things are *never* going to be the way they were before it is easy to feel discouraged. Going home is a double-edged sword, you have come so far and done well in hospital then you realise there is so much that you have taken for granted about your pre-stroke life!
In addition, progress can slow down after initially being quite quick as well which doesn't help. Your Dad has to take it easy and just take one day at a time, sometimes it feels like going backwards but just hang in there. Never give up but learning to adjust as well is important. Accepting your limitations and getting on with things the best you can are goals that can be achieved with time. 6 weeks really isn't long enough. Wishing your Dad all the best.

Bob Carey-Grieve He’s been riding a lot of stress since then, cortisol pumping the entire time. Eventually you crash. He’s exhausted most likely.

Zoe Louise Holding Fatigue and depression are very common post stroke. If he is struggling to perform daily activities such as showering himself he should talk with his GP for advice. It may be a sign of depression. He shouldn’t be aiming to be doing everything he did before the stroke, 6 weeks is still very early days, rest is very important for brain and body recovery. Good luck! Registered Neuro Nurse