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New here, comfort and advise please


Linda01

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Posted

Hi

ive been lurking some 8 weeks looking for comfort and reassurance which I have got from the wonderful people here.

 

My Mum (75) had a bleed 8 and a bit weeks ago now. She is in a rehab hospital as of last week.  She is talking and knows us when we visit and asks after people etc.

 

She still has a nasal gastric tube in but is being fed puréed foods and thickened fluids, she isn’t eating a lot hence the need for the tube still.

 

She isn’t mobile but last week was the first time in 8 weeks the physio had her taking a few steps. She was exhausted afterwards and slept a lot.

 

 The hospital approached us today and hinted that she may need to go into a nursing facility. I’m devastated, she has come a long way in 8 weeks and I feel it’s too early to make any kind of call.

 

I’m aware she probably won’t be able to return home as she lived alone and was very independent, but a nursing home just fills me with dread and guilt.

 

Mums still confused and says things that don’t make sense and forgets things easily now but she’s there I see her. And she just needs to be pushed and I’m sure she will walk even if it has to be with a walker and a wheelchair for long distances.

 

I guess my question is is 8 weeks still early? Is the confusion still common at this stage?

 

She had a shunt put in 2 weeks ago which needed adjusting about a week ago now. 8 weeks ago she was sleeping all the time and when she was awake hardly spoke and I doubted she knew who I was, she wasn’t following commands consistently and was difficult to wake. 

 

Now I see how far she’s come so I’m shocked at the nursing home talk and feel it’s too soon.  She doesn’t belong there. Thank you for any replies, 

Posted

Hi there sorry about your mom xxx

 

Eight weeks is to early to tell where she will be in a year or two's time but right now they must feel she doesn't need a hospital but she isn't ready to go home that might be why they are sending her to a nursing home xxx

 

Just keep talking to her maybe she will tell you what she wants xxx

 

Confusion is completely normal at this stage which again maybe why they are taking about a nursing home xxx

 

Hope your mother keeps improving and she is home soon xxx 

Posted

Hi Linda

 

I'm sorry about your Mum, but she has survived and is making good progress, even at eight weeks. I would recommend that you ask Mum to be listed for a rehab centre. You haven't said where you are in the uk but I do know of several rehab centres and one in particular. I will send you a private message to gain more information.

 

The hospital do have a phyiso department but a rehab centre will help Mum with all aspects of Mums recovery and you can self refer Mum to rehab. 75 is not old nor over the hill try and get the experts to view Mum and take it from, there don't give up.

 

Confusion is normal at eight weeks so is the N/G tube. Mum needs support not consigning to a nursing home just like that. I know their under pressure, but eight weeks being to soon, good luck to you both  xx 

 

 

 

Posted

Thank you for your replies. I went in this evening and since I posted physio has had her up walking and she’s been sitting in a chair and had her first go at feeding herself. So I’m pleased to see some action.  I was worried they hadn’t tried to push her a little and never being in this situation I didn’t know what we were to expect but expected more however I feel better after my visit tonight.

 

The hospital she is in is just a rehab facility really, you have to be medically ok and not needing serious medical intervention to go there. We aren’t in the UK, we’re in oz.  thank you for your reassurances , I really appreciate you taking the time 

Posted

 

Hello Linda, also welcome to BTG and thanks for sharing about your mum.

 

Glad she is making progress and is in good hands.

 

The situation we find ourselves as `carers / immediate family` is that we want our loved ones to recover as quickly as possible, they also want to get life back to what it was.... however their brain which has been traumatised and their body which has been greatly weakened by the SAH, need time and patience to heal in their own time.  Progress has its highs and lows and there are short and long term issues to deal with as they arise.

 

Keep strong for mum … she values your support as she battles to get better.

 

 

Subs

Posted

Welcome to the website and sorry about Mom.

 

Im a primary care doc here in the US but I cannot give you medical advice. 8 weeks is still very early. If she can take a few steps thats very good. Make sure she drinks lots of fluids. Tube in the nose can be very uncomfortable. But g tube and peg tube are kind of invasive. Im sure they will do swallow studies to see if she can eat ok. Bed sores can be an issue so she will need to be turned every 2-3 hours. Make sure they are checking her urine. Im not sure what other medical conditions she had.

 

We had our monk here in Maryland, he had a hemorrhagic stroke on April 29th full moon day. He had hypertension, diabetes and mini strokes before. He is 69. It was so severe that he needed surgery to remove blood and may be some brain tissue.

 

He remembers things before April 29th but can’t remember if I went and saw him yesterday. He did physical therapy but not getting much better so Medicare only pays for 30 days. I think he was in icu for two weeks. He had bone flap removed from scalp and its stored in a freezer at a bone bank. He needs it put back in later, not sure when.

 

So he is back to the monestary. Has hospital bed etc etc. home health nurse comes twice weekly 20$ per hour. He has two care takers at all times. Some are volunteers that fill up every so often but most we have to pay 10$ per hour. Junior monk is there. He is 47. 

 

His mood is variable. Good and bad days. He had the peg tube but now he can eat slowly and its out. But having a peg tube messed up his digestion. Has lots of nausea. Some days he refuses meds and throws stuff and shakes the bed rails. He pretends he doesn’t hear you. Some days he is good and gives you a sermon. Tells you to be good and practice mindful meditation.

 

We record vitals, meds given etc etc.  He used to be very independent and now he can’t even move himself and has to poop in a diaper, its very depressing for him. He sometimes says he shouldn’t have the surgery. I think there is depression and pseudobalbar condition. It will be a long road. So take it one day at a time.

 

Dont feel bad about having Mom in a nursing home. It is safer for her there. At least for the time being may be. She can have people looking after her. No one can do 24/7. You'll get care taker syndrome. So don’t feel guilty. 

Ask the docs many questions. Im sure they will try to answer.

 

Good luck and take care of yourself. Try to stay healthy. 

 

Posted

Hi Linda,

 

My Family were told to put me in a home, my Hubby said no  we will look after her.

 

I think it is early days for Mum, I still have short term memory loss, now ask me what I did when7/19 and I could tell you straight off xx 

 

Give her a chance as my Family did for me as according to OT's I would never be the same, okay short term is bad but getting better! 

 

Sing with Mum her fav song from years ago and see if she remembers as that is what my Sisters did for me.  My Daughter also had to remind them to talk with me not across me ..phew !!  

 

We need all the help we can get and I wish you and Mum all the Best xx

 

Love

Win xxxx

 

Posted

Hi Linda,

 

Welcome to BTG, so sorry to hear about your mum, as other's have said 8 weeks is very early in her recovery, it must be very difficult for you seeing your mum like this, but the fact that you are there supporting her and encouraging her is very good, but as Sub's said your mum's brain and body have suffered this trauma and they do need a lot of time to recover, the recovery road can be a bit of a bumpy one at times, she will have some good days and some bad, it is all part of the recovery process, but it is a slow process.

 

It sounds like she is in very good hands, speak to the people who are in charge of mum's care so that you are aware of everything that is happening when you are not able to be there, they won't mind you doing that I'm sure.

 

Linda also make sure that you look after yourself too, that will help to keep your strength up for the journey ahead.

 

Sending best wishes to you & your mum, hope she continues to go from strength to strength.

Love

Michelle xx 

Posted

Hi Linda,

 

You said "but she is there..I see her"  as a mother with a daughter your words filled my heart ...you love for her will be your strength as you go forward.. As many have said here 8  weeks is early in recovery of a brain bleed...I can tell you are so worried and unsure but from the sounds of it you are being a wonderful advocate for your mom... Make sure you step back and take care of yourself as well.  Prayers for you both as your mom  heals...

 

Jean

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