Jump to content

Recommended Posts

Louise, that's oddly comforting to hear about how vivid the experiences were. Dad has been having a lot of incredibly vivid dreams that he has been talking about with me, including feeding the cat (who has been gone a few years but passed when she was 17), I think they have been worrying him a little.

 

But after those 10 days or so of being very disorientated it seems like his short-term memory has come on leaps and bounds, which is great. Dad has cooked a few meals, we had curry tonight - yum! and is starting to enjoy pottering around a little more, he said he was bored the other day which was great!

 

As for the tests, they didn't happen as it was just a meeting for a referral for an assessment, which could take up to 12 months, hence why I haven't been on here in a while as I wasn't capable of anything but ranting! we're exploring other avenues at the moment, so hopefully we'll come up trumps. it just frustrates me that we seem to have to fight at every juncture and i really do worry about people who have no-one there fighting for them. its something i'm going to pursue in the future. we did, however, find out that he had a Grade V bleed.

This makes me think of you Win (Hi again!) and what your family were told, it astonishes me everything you have been through and how positive you are. and I mean that sincerely. take it from me, and other carers like me we would do it all over again in a heartbeat!xx

 

I nearly fell over my Dad's slippers the other day (he has always left them in the middle of doorways) and I couldn't get over how happy it made me!

We've been to a few garden centres recently and bought some plants for my new home (in amongst all this my husband and I's house finally came through 6 months late) and we're going as a family to see it tomorrow, which is incredibly exciting for me. Dad also bought some things and used his card (we sent for a pin reminder but he remembered it from reading it the day before), the cashier looked at me daft when i was glassy-eyed! its amazing how you take the little things for granted.

 

This has been life changing for all of us and I am so thankful that I found BTG as the support you have all given me has been invaluable and allayed so many of our fears and questions as a family. thank you all so much.xxx

  • Like 5
Link to post
Share on other sites

Good luck Laura and Dad (Whole Family) xx

 

Without you, our carers, we'd be lost,  and I do feel so sorry for those who go through what your Dad and all on BTG go through without a Family support. xx

 

Glad Dads memory is coming back, its so good when we start remembering, for you and us xx

 

Keep Well All of you and Good Luck xx

 

Winb143 xx

  • Like 1
Link to post
Share on other sites

Yes its terrible that you do have to fight for every little thing, and like you if I didn't have my husband fighting for me then the thought is just too scary to think about.

 

Ignore things like those cashiers you know why you felt like that & that's all that matters.

 

I have always said that Win 'without our carers where would we be'

it also makes you realise just who's who within the family and friends (but maybe for me that's a personal thing)

 

take care, enjoy your new home....

  • Like 2
Link to post
Share on other sites

Laura. Those moments and memories you share as you regain something you though was lost forever are precious to everyone. Our carers see the progress and we feel it. It truly is a special time, hard , not without tears but special. My grandmother ( at 90) used to come and get me in a taxi and then we would have a potter round a garden centre too, and she had better balance than I!

Sorry to hear the tests won't happen yet but to be honest I think so much changes and shifts in the initial months that I think they are more useful after the first year when things level off a bit , it's just my opinion though.

Well done to you and the family for holding your Dad steady during the tempest of his SAH. As Louise says, enjoy the new house and give yourself a bit of time to pause. I often think the strength and care and love offered by those who care for us is the magic ingredient in recovery terms but it's important that they pause and recharge too. Takes a lot of out of a person

  • Like 2
Link to post
Share on other sites

Laura,

 

Yes it's frustrating to fight for all those things, but you know what?- Life, and quality life, is well worth fighting for.  Just that one look on your face was worth the wait and the fight because it gave you a memory that you will always hold dear to your heart.

 

Don't ever doubt that - Dad is worth the fight!  The reward was so much more than just that look, for both you and Dad.  Keep on fighting, keep on loving, keep on laughing, keep on doing things together and the effort is more than justified by the quality you achieve, whatever that level is!

 

Macca

  • Like 2
Link to post
Share on other sites

Hi everyone,

 

Thanks for all your kind words and wishes. We've had a few great days and Dad is really starting to get his strength back, we've had a great time shopping about for plants for the new house.  It gives the trip a nice purpose too as shopping usually would not be Dad's cup of tea! Although I do think now that he needs a bit of space, as in real alone time, but its hard to know how to do it, particularly when the only advice we've had is "don't leave him on his own!"

 

Louise, it is not just you that has re-evaluated relationships as a result, I certainly have and have been disappointed by quite a few but wonderfully surprised by others. I was thinking about it the other day, they really do mean that it is life changing!!

 

Daff, it does give me a little lift knowing that you think they are better after the first year, we have and continue to be caught between so many health boards that we do wonder a lot about our situation, and Dad worries how much of it is due to his age (64). Its as though every time a 'professional' speaks to him they are surprised about his lifestyle pre-SAH.

 

And you are both right, I do need to take a little time, but with work, home-home and new home its all a little manic. I had a bath and read a book this evening and it felt like a luxury.  Still, its a good practice for if I ever have children! ;)

 

Macca, I am definitely starting to ease in to the role of scrappy, whilst never normally a confrontational person my Dad and my family are definitely well worth it.  The only thing that always concerns me is picking the right fight, so many times it has been a funding-related decision that it starts to wear.  The night Dad was taken ill he was in an ambulance outside the house whilst there was a 'political' discussion about what hospital to take him to, it took so long that I was able to run a mile home, get my husband, drive 70 miles and arrived at the hospital the same time as him! And unfortunately thats the first of many!

But, as the saying goes - we'll just keep on keeping on!

  • Like 1
Link to post
Share on other sites
  • 2 weeks later...

Hi Laura

Hope you are ok, your story is very similar to my Dad who had a ruptured anuerysm on the 2nd June 2015, he is doing well and the doctors are pleased with his progress. If you don't mind me asking, at what stage did the physios start to get your Dad standing and walking x x x x

  • Like 2
Link to post
Share on other sites

Hi Jump,

 

Yeah I'm OK, weird feeling this evening as today we've taken Dad from home and in to the neuro rehab ward - so strange him not being at home. Although we know its positive that he has a bed and will finally be having an assessment and some therapy.

Dad was up at about week 2, after the EVD was removed and before he went to acute care neuro. He didn't really have any particular loss of movement or strength as a result of the SAH, so that may be something to keep in mind in respect of timescales. Once he was moving there was no stopping him!xx

Link to post
Share on other sites

Thanks for this Laura. Jump is my sister. We are both really worried as dad still isn't walking! He is able to control both his legs but has pretty much been bed bound for the last 8 weeks and the past week he has been sitting in a chair. Dad is on a stroke rehab ward and not a neuro ward. The lack of walking is very worrying as we are unsure if he isn't walking because a loss of muscle mass or due to his SAH.

Brilliant to hear your dad is on a neuro rehab ward. We have been told that dad is 6th on the waiting list. He has been assessed as a 7 on the dependency scale and that those lower down the scale (assessed as being more independent) will be a higher priority. This was a bit of a kick in the teeth as it seems as though dad isn't seen as important. Any advice....

Link to post
Share on other sites

Well I would say you guys are making a formidable team and covering all bases! If I'm honest I didn't even know there was a dependency scale, can I ask what the official name is as we'll be asking where Dad sits on all of this.

 

I think the only advice is to be vocal, we've had to 'ask' on a number of occasions to make sure that he is getting the help he needs.  I wish I knew more about the movement side to make a comment, but it hasn't been an issue for Dad and he had very little contact with the physios.  I would, however, clarify just how much physio he is getting a week as there tends to be a standard for each ward.  I know acute care was only 2 visits a week.

Link to post
Share on other sites

Jump and James,

 

I was out of it for a long while and my hubby was told I might not walk again and when the  BIT Team came to see me after shunt was fitted they said to me "what makes you think you will walk again" I replied "and what makes you think I wont"

 

I started to tap my feet to music and thought if I can move them I can walk,  so in 2010 I asked my hubby for a zimmer frame as a  Christmas pressie and walked 4 steps towards him with his present.  Felt so good.

 

If people say he wont walk he will do not listen to those who are negative your Dad needs to be happy and positive right now.

 

I can walk 60 paces on a bad day and sometimes 100.  So do not give up and Keep the Faith xx

 

My back stops me from walking as it aches so much. I wont mention my weight !! lol but tell your Dad to tap feet and twist feet/ankles as every little helps xx

 

Good Luck You 2 and Family xx

Love

Winb143 xx

  • Like 1
Link to post
Share on other sites

Hi

Thanks to you all for your replies.

 

My Mum and myself attending one of dad's physio sessions on Wednesday so we can help him with any exercises we can whilst we visit, at the moment they are concentrating on Dad's sitting balance and getting strength back on his trunk and core muscles . In terms of his legs he can tap both feet quite well and yesterday I was getting him to lift his legs about 6 inches off the floor to touch my hand from a sitting and lying down position which he did, I am confident there is good movement there.

 

The physios said at the moment the brain is having to work hard to communicate with the right muscles which in time will improve , we will keep pushing daily and Dad is a very determined man

Thanks All and take care yourselves x x

  • Like 2
Link to post
Share on other sites

The good news is that slowly but surely your dad is improving. It will be a long slow journey but with the family's support and encouragement he will make progress.

All seems positive for your dad.

 

Just remember to take time for yourself.

  • Like 1
Link to post
Share on other sites

Hi Laura,

 

Glad to hear your dad is doing well and the physio is helping. What the physio has said to you makes sense about the brain having to work hard on the movement. Even now I find when I am more fatigued my body simply doesn't do what my brain wants it to!

 

My husband has also been to my physio with me so that he can help me with the exercises at home. It is very useful to have that family support and I am sure your dad will appreciate you and your mum doing the same for him.

 

Take care

Gemma xx

  • Like 2
Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...