My mum is still recovering from a brain bleed.This happened nearly 2 years ago She is asking how long its going to take to get better then asks where she is. She switches between lucid and non lucid moments . Its devastating to watch. I am torn seeing her like this it breaks my heart but not going I am scared it will be the last time. She is currently in a brain trauma unit and the staff are fantastic. It is really starting to bring me down and I cant be like this as i have to give mum all my strength. Sometimes i just don`t know what to do. Any advice anyone
Melanie, this may sound counterintuitive, but make time for yourself first and foremost. It’s draining to go see a loved one. What do you do for yourself?
Melanie,i'm sorry to hear about your mum. I know what your going thru. my husband was in the hospital for 2 1/2 years I was there every single day you start to fell burned out .I was working from 6;00 am until2;30 pm then went to visit until 7;00 my husband was having the sames kind of days as your mom.but they are better now far and fewer in between, more good days than bad. I remember he would take one step forward and two steps back.i don't know how old your mom is or where her bleed was,but my husband was 59 when it happened to him it bled in the frontal lobes he had drains on both sides of his brain to get the blood out. he also had a coiling done 3 times he had a shunt put in. once the shunt was put in he started to inprove. I will say a prayer for you and your mum.i hope things get better for both of you's and try to take care of yourself I know it's easier said then done.i hope to keep in touch to see how everything is going good luck.
I tend to see mum everyday hoping to see mum improve a little. However i come ot so deflated feeling i cant help her. I know it takes time but its so soul destroying . Everyone says to me have a break but i get so guilty that i am abandoning her and end up going sometimes twice a day
Moltroub said:
Melanie, this may sound counterintuitive, but make time for yourself first and foremost. It's draining to go see a loved one. What do you do for yourself?
Im so sorry to hear about your husband. How is he now. Is he out of hospital.Thanks for your kind words . My mum is 65 has had two brain bleeds and now has a shunt in to . She seems to be more aware but sleeps so so much . I think this might just be the brain trying to heal. I just dont want my mum thinking im abandoning her ...if i miss a day i can feel mum lose a bit of spirit ..does that make sense...
confused said:
Melanie,i'm sorry to hear about your mum. I know what your going thru. my husband was in the hospital for 2 1/2 years I was there every single day you start to fell burned out .I was working from 6;00 am until2;30 pm then went to visit until 7;00 my husband was having the sames kind of days as your mom.but they are better now far and fewer in between, more good days than bad. I remember he would take one step forward and two steps back.i don't know how old your mom is or where her bleed was,but my husband was 59 when it happened to him it bled in the frontal lobes he had drains on both sides of his brain to get the blood out. he also had a coiling done 3 times he had a shunt put in. once the shunt was put in he started to inprove. I will say a prayer for you and your mum.i hope things get better for both of you's and try to take care of yourself I know it's easier said then done.i hope to keep in touch to see how everything is going good luck.
Hey Melanie,
I'm going to give you a couple of perspectives here as I have had the misfortune to be both the carer/support person and the patient. By pushing yourself to do it all you will get burnt out and then you will be of no use to anybody. Pacing yourself for the long haul is a must. As the carer, the guilt can be a massive hurdle, but your mum also needs time alone to adjust to her new reality. So please do not be feeling guilty, just think how bad the guilt would be if you burn yourself out and could not help at all.
You MUST have time for yourself thru all of this and acknowledge YOU for the time you have given. I make that sound like an easy thing and we all know that is not the case but that "Burnout" can sneak up on you and knock you to the ground if you do not recognise it before hand.
As the patient, well, it takes time to recover (I can say that now, but I wanted to be right, straight away) I have days when I can conquer anything, but then have days that I simply can't get out of bed, so that's pretty normal to be fluctuating imo. Just know you have a great group of people here that will listen when you need.
Merl
Merl said:
Thank you for your understanding and support its reassuring to get advice from someone who has actually been through this. I find people like youself so brave and insightful. I will take your advice and start to listen. I need to. Thanks again Merl . Its comforting to know I have this site when i feel lost x I would really struggle otherwise
Hey Melanie,
I'm going to give you a couple of perspectives here as I have had the misfortune to be both the carer/support person and the patient. By pushing yourself to do it all you will get burnt out and then you will be of no use to anybody. Pacing yourself for the long haul is a must. As the carer, the guilt can be a massive hurdle, but your mum also needs time alone to adjust to her new reality. So please do not be feeling guilty, just think how bad the guilt would be if you burn yourself out and could not help at all.
You MUST have time for yourself thru all of this and acknowledge YOU for the time you have given. I make that sound like an easy thing and we all know that is not the case but that "Burnout" can sneak up on you and knock you to the ground if you do not recognise it before hand.
As the patient, well, it takes time to recover (I can say that now, but I wanted to be right, straight away) I have days when I can conquer anything, but then have days that I simply can't get out of bed, so that's pretty normal to be fluctuating imo. Just know you have a great group of people here that will listen when you need.
Merl
he's doing better thank you.yes he is home he's been home for 10 months now.i had to learn how to do things on my own but were ok he's bedridden so I get himup everyday with a hoyer lift. he can talk, eat, laugh, cry get mad he has all his emotions,he still has his sense of humor.i take him outside for a walk him in his chair of course.we sit on the patio and just talk sometimes they are heavy conversataions other they are not.your right I think it's your mums brain trying to heal. my husband slept a lot to.i know how you feel when you say you feel guilty, but you have to take care of yourself.if your visiting and she falls a sleep go for a walk for a little while, when you come back if she's still sleeping go home rest.sometimes I would leave my husband sleeping I would kiss him goodnight he would open his eyes look at me and say ok go get some rest, well I would be in the parking lot and he would call and ask were I was,i would tell him you were sleeping so I gave you a kiss goodnight and you told me to go get some rest.sometimes he just needs reassurance to were I am or what i'm doing.i also realized he was more confused when he first woke up.does your mum have a phone in her room? if she does and can use it have her call you so she knows if she needs you and your not there she can call you.i know you said she's still in the hospital so if she don't have a phone in her room see if she can have a cell phone.when I got my husband one it made a big differents.although they hade to take if off him at 8;00pm or he was calling all night long. I hope this helps you a little bit.my prayers are with you and yours.
Melanie Gorman said:
Im so sorry to hear about your husband. How is he now. Is he out of hospital.Thanks for your kind words . My mum is 65 has had two brain bleeds and now has a shunt in to . She seems to be more aware but sleeps so so much . I think this might just be the brain trying to heal. I just dont want my mum thinking im abandoning her ...if i miss a day i can feel mum lose a bit of spirit ..does that make sense...
confused said:Melanie,i'm sorry to hear about your mum. I know what your going thru. my husband was in the hospital for 2 1/2 years I was there every single day you start to fell burned out .I was working from 6;00 am until2;30 pm then went to visit until 7;00 my husband was having the sames kind of days as your mom.but they are better now far and fewer in between, more good days than bad. I remember he would take one step forward and two steps back.i don't know how old your mom is or where her bleed was,but my husband was 59 when it happened to him it bled in the frontal lobes he had drains on both sides of his brain to get the blood out. he also had a coiling done 3 times he had a shunt put in. once the shunt was put in he started to inprove. I will say a prayer for you and your mum.i hope things get better for both of you's and try to take care of yourself I know it's easier said then done.i hope to keep in touch to see how everything is going good luck.
Hi Melanie,
Like the others, I also have been a caregiver and patient. My mom had cancer twice, and so I cared for her for a total of four years, before she passed away. I had my aneurysm clipped last August.
I wholeheartedly agree with the others. You are running a marathon and so you must take care of yourself. Think of when you are on an airplane, just before the flight, when the instructions come on about putting the oxygen masks on. Who puts the mask on first? It's the caregiver, who then puts the mask on the child. It is a fitting lesson.
Just a few more pieces of advice: 1. Even if your mom is not always with it, I think it is so important to bring joy into her life, in whatever small way that can happen. Take her out in the wheelchair for some fresh air; organize old pictures; bring her flowers, paint something. Life can still be joyous. Try to focus on bringing her good quality of life in small ways. 2. I am sure your mother wants the best for you, which would mean taking a break sometimes. Just remember, you will never regret these days of caring for your mom. I felt it was an honor to care for my mom, and have never regretted it.
Stay strong, for you, and for your Mum!
Michele
Michele said:
.....Even if your mom is not always with it, I think it is so important to bring joy into her life, in whatever small way that can happen. Take her out in the wheelchair for some fresh air; organize old pictures; bring her flowers, paint something. Life can still be joyous. Try to focus on bringing her good quality of life in small ways.....
Hey Melanie,
I must fully agree with Michele. Joy is what prevents the mind from becoming stagnant and like stagnant water, a stagnant mind can also become putrid and poisonous. For the previous 15 months prior to my last emergency incident I was the activity coordinator for a residency care program for people living with a disability. We would take groups of clients out 3 times a week to participate in something, anything to stimulate the mind. My focus was my clients, so it was anything THEY wanted to do and if they were unsure then we'd make suggestions for them to choose from. I was working in the disability sector for many years and have seen individuals who were housebound often by illness or lack of supports and the changes in them when they are able to participate is massive. And as much as this was time for the clients, it was also time for us, the workers.
So I'll say it again, time for your Mum is very important BUT so is time for you. Being able to find a group for your Mum to be involved in may also have the advantage of giving you some respite.
Merl
Thank you michelle for your kind words and advice. I will take them on board x
Michele said:
Hi Melanie,
Like the others, I also have been a caregiver and patient. My mom had cancer twice, and so I cared for her for a total of four years, before she passed away. I had my aneurysm clipped last August.
I wholeheartedly agree with the others. You are running a marathon and so you must take care of yourself. Think of when you are on an airplane, just before the flight, when the instructions come on about putting the oxygen masks on. Who puts the mask on first? It's the caregiver, who then puts the mask on the child. It is a fitting lesson.
Just a few more pieces of advice: 1. Even if your mom is not always with it, I think it is so important to bring joy into her life, in whatever small way that can happen. Take her out in the wheelchair for some fresh air; organize old pictures; bring her flowers, paint something. Life can still be joyous. Try to focus on bringing her good quality of life in small ways. 2. I am sure your mother wants the best for you, which would mean taking a break sometimes. Just remember, you will never regret these days of caring for your mom. I felt it was an honor to care for my mom, and have never regretted it.
Stay strong, for you, and for your Mum!
Michele