The "what happened to me" moment

[kaj]

Mom is going to be four months post SAH tomorrow. She has been home now for one full week. My dad says that she is a two person job right now. She needs two people to transfer her because she doesn’t really help him and the caregiver. What is starting to really bother me is her cognition. Did anyone experience what my mom is experiencing? She does not understand, still, what has happened to her. She doesn’t remember her past life and all the things she could do before the SAH. She goes about each day as if nothing is different. She knows who we are so I know she has to have some kind of memory. Since she has been home she seems to be much more tired and less cooperative. She zones out quite a bit. She just had a CAT done last week so I know it is not Hydrocephalus. I am thinking she is so tired because she is home now. I know in the nursing home she was just sat in front of the TV when one of us was not there or when she was in therapy. Maybe being talked to more and asked what she needs more is tiring her out. Anyone else experience this. I am worried now that she is not going to get much better. Any advice would be greatly appreciated. Also, I was there to help my dad on Sat. My husband, myself and the three kids were there for six hours. We didn’t plan being there that long but had to help move things around, etc. The next day my mom was totally out of it. It was very difficult to get her out of bed. She had trouble eating breakfast and wasn’t really responding to anyone. I am thinking, again, that she had too much stimulus on Saturday and it wiped her out.
Thanks,
Kim

[Kyria Dylan]

Hi. yes, sat. was probably too much for her since she has had little activity and needed to 'zone' out the next day. 12 weeks since surgery is still pretty soon to expect her to be back up to speed. we all have spoke of healing at different time frames,some quickly ,some slower. it has been 17 months since my surgery and i am still not up to speed. have come a long way ,but i'm not there yet. patience and taking it one day at a time is how i look at life for myself. hang in there it will get better. i pray God will Bless you and your family , showering you with energy,patience,endurance and hope for a better tomorrow. Kyria Dylan

[kaj]

I know we have to be patient but as time keeps passing my anxiety level is increasing. I keep thinking that she is going to be much better but now I am not so sure that I can convince myself of it anymore. I am going to keep trying with her and look for any sparks. Right now the best thing for her is to get her stronger. If we could get her to walk with a walker, life would be easier. Then she could walk to the commode or put herself on it. She is so weak that is makes things very difficult. We hope that she can get stronger and follow the commands to allow us to help her. Thanks for your thoughts and prayers.
Kim

[Kyria Dylan]

You mentioned she is very weak,have you talked to the doctor about this? maybe some vitamins to build her back up? talk to the doctor about a blood test to check for(sorry i don't know what it is called) anyway a blood test would show if she is in need of whatever it is that gives us energy. iron? vitaminB? wish i could remember,but the doctor will know. after i started taking vitamins and certain natural herbs my energy level went way up. i was tired all the time and it took about two weeks for the program to really kick in and when it did i not only had more energy but mentally i was more alert. Kyria

[Travelingdueo]

Hi Kim
Its only 4 months .. looking back on Ray at four months he wasn't walking using the wheelchair he would scoot himself on the board most of the time.. He would have to dress himself in bed as he didn't stand yet. He did not hardly speak except to answer you. It has been 22 months now for us.. Ray still don't realized what happened to him that he had a brain bleed he knows there is a problem that he don't remember but not to the extent that his short term is not there.. He still at times will not remember some of the old memory but then it comes back later on.
He does remember his family members and sees pictures of them..
To know the nephews that are really new to him that live in the area he don't know there names.
For the tireness... the brain has to heal and it takes a long time.. Ray would take lots of naps maybe only 1 hour at a time but he would sleep off and on in the bed back then..

Try to have her keep a routine that may help her rest more too.. over stimulation will tire her as you guessed from the weekend.

Does your mom stand? What does the PT do with her?
When Ray first started with PT I was afraid to have him try the walker until the PT tried then I did what she did.. I first walked in front and then had his sister come from behind with the wheelchair incase he got tired and was close by.
At the beginning I mention Ray didn't stand he wanted to sway backwards.. well one of the things I remembered them working in the rehab was pushing a bedside table .. He wanted to stand but didn't know that he could not stand on his own and even thought he could walk on his own and fell at first a few times.. So what I did was had him bring the wheelchair to the kitchen table and put the brakes on and stood up with hands in front of him on the table and lean forward that seemed to help with the swaying and somehow later I think he did one month in the wheelchair when he came home and then he went to the walker.. and by 4 weeks after using the walker he was using a cane as he would take off without the walker.

So as you can see from my experience with my husband that he had some of the same issues that your mom is having.. Yes its almost 2 years and some of the issues are not better like not knowing that he has a problem but yet he can function and make conversation .. he just can't be left alone as for safety and making sure he don't wander away as he would get lost and not know where he lives .. As he at times thinks we are in Michigan and reality we are in Washington....

If you or your dad need someone to talk to I will be happy to talk to you.. I am on Pacfic time

Good Luck .. Did you get a chance to read the letter from your Brain I think its a sticky up on top.. might help your dad and others understand too.

Also checkout to see if there is a support group for caregivers that may help your dad with talking to others on a one to one too...
I went to one but it was only me at the rehab unit ... we went to a TBI support group but I don't think that who goes is what and where we are A brain aneurysm one would been great as a one on one to tallk to = but thats where this forum is great for just can't be in person.

[kc_dawn]

Hi Kim....It's been 9.5 weeks since moms rupture. She has been home a week and a half now. She can't remember most of the past. She remembers some things when we "jog" her memory,but for some reason no matter how many times we tell her, she can't ever remember she has an aneurysm. She has the same personality as before the rupture but she is so different. She likes different foods. She isn't shy about telling you what she thinks-she blurts it right out....she is so funny.She remembers all of us by name and all the grand children. She has come to remember her surroundings. Some days she even remembers her address.When she has a good day she remembers alot but then the next day she might not remember any of it. She takes several naps a day, she is still very tired. If we visit we try to only have a few people there at a time.The increased activity and comotion really tires her out.She does some "strange things". She goes to bed extremely early. She has absolutely no desire to do anything at home(this is so unlike her) If the phone rings and she's right beside it -she doesn't even attempt to answer it(also very unlike her)She says she's always freezing. She gets weekly labs drawn.She needs someone with her 24/7. She talked me into writing on her past history (at the doctors)that she had a hystorectomy(i asked dad yesterday and NO she didn't) Alot of the things she will argue with you about that she remembers- aren't real memories(we think it must be dreams)???Any way....Hang in there!! God Bless:)

[rmbing64]

Hi Kim. I am almost 8 months post-rupture and still tire very easily. If I am having a good day, I tend to over-do it and am wiped out the next day. Has PT given you a gait belt? That would make it much easier to help her transfer. I do not remember much about the hospital but my husband said I asked over and over what had happened to me. I thought I had had a kidney transplant, I thought I was in Canada and I also thought I had been the victim of a drive-by shooting. I did not even really realize that I had had brain surgery. It will improve. I was still sleeping 2-3 times a day at that point. I will keep you and your family in my prayers. Rose

[kaj]

Thanks for the advice and personal experiences. We will try to get her more rest. My mom now has some type of sore on her heal. They are going to get a wound person to look at it. It never seems to end. I don't want this wound to keep her from doing physical therapy. She has got to get stronger so she can stand.
Trying to keep positive.
Kim

[Greenie]

It all takes time. Give it time. I know it's frustrating. But the brain healing takes an enormous amount of energy and time.

My Mother thought my grandmother was alive for the longest time. We started to think that maybe she had visited her in her darkest hour and comforted her.

She thought she had surgery but couldnt quite grasp the brain surgery part. Short-term was non-existent. It was hard to be patient at times. It took everything I had and sometimes I just had to get away. She couldn't remember her house or my house. Couldnt remember so much.

She was extremely tired when she first came home. She could barely be awake for the therapists. But in time she started to get stronger.

Now she's balancing her own checkbook! Eyesight is the only thing that is really holding her back. She's doing therapy for another 4 weeks, and I'm trying to get her some pyscho therapy (medicare pays yay!) because it's beginning to be overwhelming, everything that has happened to her. She constantly askes about the ordeal. And stares at you in unbelief when you tell her everything that happened. It freaks her out.

So hang in there Kim and Kimberly. It's a long road. I pray for you both.

Peace and hugs, Brenda

[dawnmn]

Kim,
Like the others have stated the tireness is normal. I remember after I got home from the hospital I slept alot. This went on for months. If I had too many people around me the next day I would sleep the whole day.
I had a hard time understanding what had happened to me. It must have been months before I started to ask questions and then I would forget what was told to me so I would ask the same questions over and over. The healing for me didn't really start until my brain absorded the blood from the rupture which takes awhile. Hang in there!
Dawn