Mum had a rebleed

[Chris G]

I am sorry that I don't have much advice to give.  But I offer my thoughts and prayers.  I hope she improves.  I write myself notes most mornings of things I need to do that day and for the rest of the week and mark them off as I go.  It helps me avoid that feeling of forgetting to do something.  My favorite thing lately is to put my glasses in my shirt collar and then freak out because I can't find them.  My wife thinks this is really funny.

[luke]

Quick update:

I've taken the advice from your lovely people & gone with some more visual reminders over the watch.

I've put up 3 chalk strips & a notice board. One chalk board is used for anything we run out of that needs picking up from a quick shop. The second is called "Mum's Memory Bank". She writes tasks she has to commit to short term memory. For example, she has had enough energy to start doing a few things like preparing lunch. She will write the sandwich fillings on the board with our names & can do everything without having to ask over & over again. It works a treat for short term stuff. The final chalk board is for longer term things she wants to remember which she glances up at which refreshes her mind. 

I've then put up a notice board with all the chores that need to be done within the week. I've blitzed the house from top to bottom so its spotless now then set up a time table with each room that needs to be cleaned each day. I've split the tasks up so there is only a few things to do each day so she won't feel overwhelmed. I then help her when she has the most energy to get it done & she's happier now she's feeling like she's contributing.

Thanks for the pointers to all that commented, life is finally starting to look up after this terrible year.

[Winb143]

Next step to take her out even for a water or a cuppa and then she will have an aim.

 

My hubby took me out and although I remember nothing he said I enjoyed it and I used to drink from a teacher beaker then progressed to cardboard cups lol. But I remember being in a light place with all windows it was Marks and Spencers café with lots of Windows xx

 

I am so glad I had my hubby and Daughter as when I had hydrocephalus I used to think the OT's were bullies to me ha !!

I must have been a pain as when they told me to do things I used to cry and sulk as they told me off.

 

Glad your Mum has you xx keep spirits high Luke and good luck to you All xx

Winb143

 

[Tina]

Hi Luke

 

Thank you for updating us on your Mum's progress.

 

Great news that all your efforts and thoughtfulness has helped your Mum to feel a lot happier

So pleased that life is finally starting to look up. 

 

Wishing you all well and look forward to hearing how you are all getting on.

Take care

Tina xx

[Skippy]

Luke I have the biggest smile on my face - I love it when things improve not only for a fellow sufferer but also their families.  So glad that things are looking up and Mum is feeling happier.  I know I felt helpless after mine and mine wasn't as severe, but the fatigue is all consuming so all the little things helped.

[paul99]

Luke

 

Its nice to read mum has started her recovery long may it continue,

please keep us informed great stuff.

[subzero]

Hi Luke

 

So pleased to learn of your mum`s progress. It must be particularly encouraging for you and your dad to see the positive signs in her recovery.

 

You have done well in helping her reach this stage. How is your dad keeping?

 

Supporting close family post SAH can be so demanding and so rewarding along the way.

 

Thanks for keeping in touch and wish you and your family well as you care for your mum.

 

Subs

[luke]

17 hours ago, Skippy said:

Luke I have the biggest smile on my face - I love it when things improve not only for a fellow sufferer but also their families.  So glad that things are looking up and Mum is feeling happier.  I know I felt helpless after mine and mine wasn't as severe, but the fatigue is all consuming so all the little things helped.

The fatigue is the thing that really gets to her. She can't really do anything for long without feeling like she's run a marathon. Going up the stairs a couple times & shes absolutely done for a few hours. I'm trying to work around that  by giving her things to do in which she can sit down. Had her folding the washing yesterday & she was able to do that in her own time. I think the sense of achievement helps her a lot.

 

14 hours ago, subzero said:

You have done well in helping her reach this stage. How is your dad keeping?

 

 

Thank you.

My Dad is doing OK. He is really happy that she is doing really well, although he is ill himself so is suffering in that regard. He is in a lot of pain from being in a motorcycle accident 8 years ago - he broke his back & had spinal surgery. Then the following year he had heart failure & a valve replacement. After it all he got severe scarring on the lungs, so along with the pain from his back he can have some pretty rough times which comes in cycles. He's having a bit of a rough time now so finds things pretty difficult.

He's been ill pretty much his whole life so has his ways of dealing with it, so I let him have his space & help him out where I can.

 

[Skippy]

WOW - you all have so much to deal with  which makes how well you're all doing all the more admirable xxxx

[Daffodil]

Luke, well done indeed for giving mum the help but also standing back and letting her own and find her own achievements each day. That will help her confidence , her stamina and also give her independence so she feels less reliant on you which us proud mums like to feel. 

Great work and hope you are looking after yourself also.

 

Take care. 

 

[luke]

Has anyone had to deal with confabulation after their bleed?

 

My Mother confabulates about certain things regularly. She is adamant that she takes Warfarin on a regular basis after a heart problem. She doesn't, & I explain to her that she used to do my Dad's pills for him every week, so she may be getting muddled up with that. This worries me as I don't want her taking medication from my Dad on the sly.

 

I have taken her to the Doctors & even had the Dr write a signed note saying she has never had a heart condition. She will believe it for a small period but within an hour or so believe she needs warfarin. Its almost become a reason why she is feeling tired & ill. She says "well I should be on blood thinners & then I'll feel better".

 

She also thinks there are two of me. She remembers me when I am younger & her mind tells her there are literally two of me. I question her & she says the other Luke with the exact birthday, then describes me when I was a young boy. Every other day I explain to her how that isn't logical & she accepts it, but reverts back in a short time.

Did you or anyone you know confabulate like this? Did it ever get better?

[Louise]

I can relate to the younger version of you. I found that with my husband and friends I'd look at them but saw there younger versions eventually this did ease thankfully, its draining.

 

Good you've had Mum at the docs you just have to keep reminding her....

[Winb143]

Luke,

 

I saw my Daughter walking with my hubby when I had hydrocephalus and she was 14 but in real life then she was in her 30's.

Guess you could call that confabulation ? After I had my shunt put in my Daughter said "Welcome back Mum" and we both cried and hugged.

 

Me I guess for what I had put them through.  Now we laugh at the things they tell me what I said and done. I even thought my Dad was alive. He died in 1999.

 

You hang on in there and your Mum will get through it with your help.  Keep her brain busy by doing easy quizzes xxx that's what daughter did with me.  Singing helped me, but poor family!!

 

Love to you All

Win xx

 

[luke]

Not a great day today. We received a letter from the hospital detailing  correspondence between the neurology department after her last check up. We have asked for all letters sent to be copied over to us so we can keep track of everything that's going on. 

The last part of the letter was worrying, "As expected, there is some residual filling and that it is felt the patient should be offered a repeat angiogram with possible further coiling or treatment as indicated."

 

My Dad spoke to the consultant neurosurgeon who said everything looked good, so this was a bit of a surprise. The last time they picked up the residual filing they didn't tell us & the re-bleed happened. We are going to be hounding them every week for answers until something is sorted.

We haven't told Mum yet as we don't know the full picture of what's going on. I don't want to stress her unnecessarily.

I'm hoping they get something sorted ASAP. Last time they said they thought they had time, so put off any treatment which turned out to be a major mistake. I don't know how common it is to have the aneurysm re-coiled, has anyone else had to have a re-coiling?

[paul99]

hi luke

 

im sorry to hear that mum may still have a problem I think there are quite a few on here that have been recoiled and I will leave them to give you some insight just wish mum well take care and good luck  

[Karen]

Luke, I have a neck left on my aneurysm from 11 years ago... I'm expecting to be re-coiled at some point. I've lived with this for quite some years. My aneurysm neck was quite small and at that time it, possibly posed more of a risk to insert more coils, rather than leaving it alone and cutting off a major artery.

 

How's your Mum doing? xx

 

 

 

 

[Super Mario]

Luke, I too have a neck on my aneurysm that was never checked as I was told it was stable. Recently, 12 years down the line, I requested for it to be checked. I recently had a MRI and the results came back as everything is stable. My neck hasn't changed at all in all those years.

[luke]

16 minutes ago, Karen said:

How's your Mum doing? xx

 

She is doing well. She is up & about a bit more, helping with food & doing bits here and there. She did about 3 hours of cleaning the other day. Went through all the draws & cleaned them out. Got the dirt I seem to always miss! So I think her energy is up. She's still sitting around in her dressing gown though, which is hard to get her out of. I need to start walking with her which will give her a reason to get dressed.
 

16 minutes ago, Karen said:

Luke, I have a neck left on my aneurysm from 11 years ago... I'm expecting to be re-coiled at some point. I've lived with this for quite some years. My aneurysm neck was quite small and at that time it, possibly posed more of a risk to insert more coils, rather than leaving it alone and cutting off a major artery.

 

We don't know the details of the filling yet. When she had the second operation, after her second bleed, the surgeon told us that due to the location they didn't fill it completely as it could block the artery which is responsibly for supplying blood to her legs. So I guess they were expecting a bit of a 'neck'. However, I'm not sure if it is different for my Mum, as when the second bleed occurred, they said that the coils got pushed to one side in the aneurysm which created a nipple on the top. That point failed which lead to the grade 5 bleed. Just hope they don't faff about this time & act quickly regardless.

[Karen]

Luke, bless you... I didn't have any information. I've had two bleeds too. 

 

I'm still here .... Glad that your Mum is doing well and cleaning! You know what? Get your Mum out in the car if you can ... take her for lunch or some nice countryside views.... if she's not up to walking, a wheelchair would be good ... contact your local social services.... they will be able to help you...

 

I initially had a wheelchair ... it was borrowed from a friend with elderly parents ...  it was the only way, that I could get out and get some fresh air. Getting out from these four walls was perhaps the best thing and only thing that I could do in the first year.

 

Getting out and about, helped me .... it diverts your mind .... there are some times, when I still need to walk with a walking stick ... it's still a learning curve for me too.

 

Take care, your Mum is lucky to have you. xx

 

 

 

 

[luke]

 Karen, thank you for the kind words.

Two bleeds as well!? You've got that warrior spirit my Mum has!

I'll see what she is up for doing & make a plan to go out a couple times a week.

 

We are planning to go for our first family meal with the extended family this weekend. So it will be quite a big thing for her I expect.  I'm going to make sure she sits in the corner seat with me next to her as she is most comfortable around me. I can keep her laughing & she won't feel too much pressure to interact with the whole table which might make her anxious. 

Thank you for all the advice & this forum to interact on xxx
 

 

[Karen]

Lol Luke, I don't know about the warrior spirit, but when you have good family about you, it makes the world of difference! Yep, I've had two bleeds.

 

I hope that your meal goes well, gently does it and I'm sure that your Mum will enjoy it!  Ear plugs can be a good thing on family occasions post SAH .... or just a quiet corner ...  I'm sure that it will all go well... xx

[kempse]

Hi Luke,

Glad to hear your Mum is doing well.  I hope your meal with family is enjoyable - a good idea to protect Mum in the corner as these gatherings can be a bit overwhelming.

 

I've had my aneurysm re-coiled - about a year after the bleed - it was filling up again and likewise I was told that they had deliberately not put too many coils in for fear of them coming back out and causing me to have a stroke. Mine has a wide neck and earlier this year after an MRI, I was told it had grown slightly (very slightly in 7 years) and was offered the choice whether to have an angiogram and find out whether a stent was required to hold more coils, or leave it for the time being and have a scan next April to see if it has changed further.  I opted for the latter.

 

I can fully understand your concerns with Mum having had a second bleed - so I hope all works out for you all.

 

Best wishes,

Sarah

 

 

[luke]

The hospital is moving much more quickly this time around. They have booked her in for an angiogram next week.

Also, did anyone suffer from dry skin, especially around the scalp after their coiling? My Mum never used to have dry skin & now her scalp is really dry. Her hair has become really thin as well.

[Karen]

Luke, I also had a thinning of my hair and very dry skin too, after the coiling .... I was told that it was down to shock and my hormones were all over the place too.... such is the brain and what it controls. It's all okay now....

 

Is she keeping hydrated and drinking enough? 

 

If she takes a bath and her skin is very dry, try Oilatum bath for dry skin (you can get it from supermarket) ... it's pretty greasy, it's not cheap and it will leave a bit of a ring mark around the bath tub that will need scrubbing, but it's great! .... very natural and soothing for dry skin. If I remember rightly, you can get this on prescription too or you used to be able to, but it's probably cheaper at the supermarket now, unless she's entitled to free prescriptions.

 

I'm not sure what your Mum uses for her hair ... but try the Dove products ... they're pretty good and quite gentle on the scalp and hair ... 

 

Also, if nutrition is a problem, then perhaps a trip to the Docs to see if she's deficient in anything? xx

 

 

 

 

 

 

 

 

[luke]

3 hours ago, Karen said:

Is she keeping hydrated and drinking enough? 

 

Also, if nutrition is a problem, then perhaps a trip to the Docs to see if she's deficient in anything? xx

 

 

 

She drinks quite a lot. I try to keep her topped up with water, or in her preference coffee!

Her diet has gone down hill. She doesn't like a lot of the healthy stuff I make & will often snack on chocolate / crisps / sweets a lot of the day. If there aren't any snacks she really only wants bread, sandwiches, fish fingers, chips etc.  She has put on a lot of weight since being in hospital & has gone from a size 8 to a size 14 which she isn't happy about. She doesn't have the energy for exercise & junk food seems to be comforting for her.

Going to the pharmacy tomorrow so I'll ask for the creams/bath oil.

Thanks Karen