A question for you survivors

[jldunston]

 

I'm a caregiver to my wife who had a stroke last Feb . . Now and then she has a "meltdown" of sorts because of the way things have changed in her live recently , mostly her not being able to take care of things like she did .

so the question is ......

What are some things she might need to hear , things I can do to snap her out of her spell . Sometimes I talk her out of it but sometimes I'm exhausted and on the brink of my own meltdown so I don't know what to say or do .

 

 

 

Thanks ,

[Mema]

She is coming up on her first anniversary so she is still in the grieving process, which takes awhile to get over. At one year, I was still angry and sad.

 

What are your wife's disabilities? Is she making progress with her therapy? Recovery from stroke can be the hardest work she has ever done, but it does get better.

 

Does she use the computer? If she would read some of the posts here, she might become more hopeful and accepting.

 

It will be 4 years for me on January 11. I was 71 when I had a hemorrhagic stroke on the right side of my brain. It left me with left side paralysis. This is not the way I intended to live my retirement, but I find I can be happy and content with my new life. My husband of 52 years looks after me with the help of a young woman who comes in for a few hours each day during the week.

 

I guess the only thing I could say to your wife is to keep working and it will get better. She might want to look at some of the blogs and maybe try writing one herself. Click on Community Links, then blogs. Blogging can be helpful for you both.

 

Welcome to the site where you will find warm, caring people who understand very well what you and your wife are experiencing. Come back often.

 

Vi

[gramma]

The only thing I can say is just love your wife, she didn't ask for all of this and it is really hard going through a stroke. My life has change so much because of mine. I used to be very independant and could do anything I set my mind to. Since my strokes, I am more needy and my feelings get hurt very easily. I always had a problem with depression, but I think it is worse now. Just try to let your wife know that you love her no matter what. Since my strokes I feel stupid, , not very in control of my emotions. Just be there for her and let her know that you love her, no matter. I hope this has helped and I hope things get better. Hugs, Diana

[HostAsha]

Hi :

 

I will tell you what helped me immensely. My husband telling me it will get better & keep your head above water, this shall pass too. My husband constant mentioning he will be with me no matter what. though Initially I was on antidepression pills & that helped too. but for me personally finding this site & blogging on it was huge relief. On this site I found out I am not alone on this journey & there are so many far worse off than me. I used to count my blessings daily in the begining. slowly I realized I had never planned for this thing in my 30s but we adjusted our live on this road now. & we are happy once again.

 

Asha

 

[Le Hermite]

Hi....

 

I think what happens with your wife is not unusual.....I know in my case I have the "tireds" when it gets to me....my motivation goes away.....Sometimes this can be for a couple of days....

 

She's lucky she has you around.....

 

Like Vi says Ya just have to keep working....

 

What helps me is setting mini-goals, and just work until I can beat it....

So...at one time it was jacket zippers...another time it was using a hand can opener.....shaking a person's hand...

When ya succeed, ya get a mini-reward....

 

There's seemingly hundreds of different things ya can't do like before, so there's lotsa those to fool with....

 

Throwing a karate punch took 6 months.....I finally got it, though there's some days I can't...a work in progress....

 

The other thing....Strokenet is a good place to ramble around in....If she's stuck with one handed typing, like me, there's a program built into WINDOW$ to help....

 

There are times when yer sitting in strokeland, and it feels like you are all alone...despite people around you...

And then you find out, yer really not alone at all.... you just didn't know about alla the other folks sharing your trials and tribulations...

 

The thing is....only the Stroke Survivor completely knows what their stroke has done to them, and their job, if you would, with the help of others, is to figure the way back....

 

It's a tough job...but if ya work at it......you will prevail...

[AllanWilliams]

Hi

 

There is a lot of emotional thoughts happening to most survivors even males after a stroke it is just a part of life,one of the best things well for me it was when my daughter just kissed me on the cheek and said i love you the meant more to me than anything else, it works both ways you doing it for your wife

some accept what happened quite quickly a lot take some time to realize there life has changed and it has changed but you can still live a full and meaningful life after a stroke. I had a stroke lost my memory couldn't walk unaided for months then a heart attack then lost my legs but I still enjoy my life it just takes a little longer with some just be there to show your love, encouragement and support for her,there is light at the end of the tunnel and you will both reach it just keep a positive attitude and it will happen.

 

Allan

[jldunston]

Thanks for the replies ,

My wife has sat at the computer a few times but still has trouble reading ,

She's weak on her right side , she is able to walk , when we leave the house she uses an AFO .

Her right arm has come along way . well ,, everything has come a long way . They thought she might not make it when she got to ICU and then thought she might not get out of bed but she left rehab 4 months later walking a little .

She still has cognitive issues sometimes .

she was 30 when she had the stroke , she had the stroke 3 weeks after she delivered our daughter , we have 2 older kids 11 and 8 ...

[dstraugh]

Remind her that she is doing better than she was Feb. 07. The first year can be the toughest on survivors. Ours and the lives of our family changed in a split second.

 

Part of the stroke journey is acceptance of what has happened. You might want to read and print up the 5 stages of grief - http://www.strokeboard.net/index.php?showtopic=857 This might be of benefit to you both.

 

My 4 year anniversary will be this week on New Year's Day. Even after this amount of time, I still face the day with a nervous feeling in the pit of my stomach.

 

Encourage your wife to read the posts and replies either by sitting at the computer or you printing them up for her. Neither one of you are alone on this journey. We're all right here with you.

 

God Bless & (((hugs)))

[Le Hermite]

Hi Again....

 

Your wife is one tough lady......but I suspect you already know that.....<G>.....!

 

She's doing GREAT!

 

Heck.....I hafta wear the AFO around the house, and with a cane outside......

 

Having a stroke messes up your sense of time.....Everything seems to take forever.....

 

Cognitive stuff....I keep a notebook nearby.....

I figure my brain is working OT trying to get stuff straightened out, so I give it a hand...

 

The hardest part for me.....was getting over that the stroke had happened to me....

Believe it or not...that was the first two months......

 

It ain't fair....None of my friends...I look terrible....

 

Uhhhhhh....I found out about friends (and relatives) too....

 

Then the thought came....OK...so these are the cards that are dealt...

It's a crummy hand, but I had met folks with very much lousier cards, in the hospital...

 

Let's see what we can do.......

 

A new life....with I think more of the PITA aspects...

 

But, I ain't gonna fold yet.....

 

Please tell her...."You Go, Girl!" from me......!

[jldunston]

[

It ain't fair....None of my friends...I look terrible....

 

Uhhhhhh....I found out about friends (and relatives) too....

 

 

 

 

We're finding out about friends ,, I think that bothers her as much as the dissabilities .. The people that help us are they people I never would have expected , I actually barely knew them before and the folks that we would have killed for are the ones we never hear from .. last week I read an thread talking about why some people help and some run away ,,, It was like I wrote every reply .

 

 

Thanks for all the replies

[Farrell]

Hi Josh ~

 

I was 44 @ the time I had an AVM hemorage causing my entire rt. side paralyzed.

all I can say is recovery takes a long, long time! I had a wonderful, faithful husband

that stuck w/ me the whole way. My 2 girls were 8 & 9 @ the time & we were in process

of adopting a boy & girl. I feel for your wife who can't hold her newborn among the disabilities

the stroke left her with. Then your older children have there thinking to do. I got owly

to. It comes from damage to the brain, feeling insecure, repeatin myself :juggle: losing

the me I was use to know & then feeling so so bad for my family who I watched from

a distance go thru so much & i couldn't do anything @ all to change it. I wasn't to live but

God had other plans. Our days are #'d, it wasn't my time. It took a long time of adjusting

& several yrs. before swimming came back to me, then driving w/ left ft. gas pedal in the day.

 

God does not give us more than we can take. Josh what is your wife's name? Give her

my love & tell her Nancy loves her & after 14 yrs. i made it so she can to. We ended

up adopting the 2 kids. one was 15 mos. old @ the time. Now she's 16. I had help come

in. Maybe you can get the State to help w/ costs. Or do you have a friend or daycare

that has been recommended when baby get s a litle older till then God has the right one.

Maybe a relative ....(just my thoughts that came to me) God has the answer. But I will

say this stroke board helped me feel like I wasn't the only one...My family didn't under-

stand...That was hardest for me..I was an active Mom before stroke when it came to my kids.

Now I can't do any of those things but the Lord had me live to enjoy my family in a differnt

way. But it does take a long time to adjust. When my husband tells me to go to my room

& treats me like one of the kids thats the hardest...(he doesn't do that anymore when

I could tell him that hurt to the core.

 

God chose you to be the best Dad you can be & husband Josh my heart goes out to you..

It isn't easy! 2 wks ago we lost our 21 yr old. She was the 8 yr. old when I had my stroke.

Amy took it hard...She wanted her old Mom back but then she became the softest one & tender

one to me as she grew older. Saying" Mom you can do it. Your an inspiration to me &

everyone else! Come on Mom you can do it" So Josh hang in there...You do have your wife

alive. Give her time & space to heal..it's a long process...She needs you! I will pray for you

and your family.

 

Take care my friend & give your wife a big hug for me...Nancy(AMy's Mom)

P.S. I had to respond I'm still greiving but I know there's a way you can do it!

[hotrod78]

I am only 2 months in but I can tell you in my own life somedays nothing my family could say would make me feel better about my life right now. But at the end of the day the fact that they but up with me says a lot. Other days...I call them my not so bad days...my husband telling me he loves me and he will alway be here to take care of me and Im not a burden and of course its always nice when he tells me I am the most beautiful woman in the world ( he even has this cute voice he says it in...my crazy honey...lol ). Usually all of those things are followed with kisses. And then we do other stuff like order in and watch a movie or something to get my mind off what I cant do and back on things I can still do. My husband really goes the extra mile to make me feel like I am still the woman he married even though I know Im not in the physical sense and he deserves to have way more then I can offer. He says Im wrong about that but that is one of my personal struggles. Like your wife I am also 30 and I have 4 children. Losing my independence has been very hard but even harder has been my struggles with my children especially my 2 year old. My older children have been great through this. My 2 yr old is two young to really understand. I have a caregiver who lives in the home and she not only helps me but she has also kind of had to step in and be me when it comes to chasing and caring for my two year old in general when my husband is away at work. She is really good with my kids but sometimes I feel like less of a Mom because I want to be able to "be Mom" but in some areas I just cant. Anyway....I hope a peak into my life can help you with yours. I will pray for your family.

[sue in oz]

Hi Josh

 

Thank you for supporting your wife so fabulously. I'm sure that it is appreciated even if not verbalised.

 

There has been lots of great info given above but I thought I would add my little bit as it has a bit of a different slant.

 

While I was in hospital I knew that I had some significant emotional issues to deal with but waited until I got home ~3 months later. I too would have melt downs, tanties & exhaustive crying fits that would last for hours. I felt frustrated, guilty, not brave, etc. I'd changed my husband's, son's & my lives forever & boy did I feel guilty.

 

I saw a psychologist I had seen before for depression (so I know I am pre-disposed) & he diagnosed PTSD. Basically there were quite a few events & thoughts that I wasn't processing normally & they would just go round & round in my head, getting worse with each trip The main treatment was EMDR & some counselling. I had no meds for this. The difference that it has made to my life has been tremendous. It has given me the emotional stability I needed, the strength to keep moving forward & to help others where I can.

 

My advice to all the strokees I visit at the hospital is that if you are getting stuck in an emotional rut, please get some help. You get help for your body, there is no shame in getting some help for your psyche - some things you just can't snap out of.

 

So please keep loving & supporting your wife & if you think she might benefit from some psychological help, please organise it.

 

HTH

[merichsen]

Josh,

Time heals all wounds is an adage that applies to stroke too. The emotional and psychological impact of losing everything familiar to you in the blink of an eye is devastating. When you back that up with the fact that you were blindsided by it and the fear it could happen again, it's pretty overwhelming. As time goes on you come to realize that the constants in your life are still there, as you are showing you are for her. You also see that who you are inside is still the same. Trying to understand it all may only be made worse by cognitive deficits.

 

It is extremely frightening because you are unsure if much of what you are feeling in this new unfamiliar world is only happening to you. That's where we come in. We've all started out in much the same place she is now. With questions like... Do I vaguely resemble normal in some way? Here she will find that most of us had vision problems, couldn't type, took forever to understand and respond to a post, needed help doing so. We all cried a lot, got depressed, were scared and thrown in to an unfamiliar world and were lost. She'll also see that we all survived and that we are a community who are an upbeat family who have a bond much closer than most of us had with friends prior to our strokes. We accept one another for who we are because that is how we learned to accept ourselves. It would help her greatly if you could help her to start to talk to other survivors.

Maria :friends:

[jldunston]

Thanks again for all the replies and I apoligize if it takes a while for me to reply to PM's

[ksaul]

hi josh,

the replies to you question and concern about your wife are so on target. it is so great that you are here trying to find answers and trying to understand this situation. i hope you will be able to join a chat at some point...we have one for caregivers on tuesdays, but you are welcome to drop in to any chat.

i want to say how sorry i am for what has happened to your wife and family. the first year is the hardest as everyone has said. i still get emotional especially when i get tired. also, my doc said the part of the brain that is damaged has much to do with post stroke feelings as physical deficits.

as what to do to support your wife, i suggest you acknowledge her pain and grief...and that what has happened is unfair. also, guys often try to fix a feeling......don't try to fix it, just be there as a support and comfort. also, try to take care of yourself and don't stuff your feelings....you both are going through so much right now. encourage and support........you and your wife and family are in my thoughts...kathy

[kwaltke]

It will be two years for me in Feb. I have had my melt downs mostly due I think that as I make a little progress my family has expectations that this hurdle was crossed now do it all the time. I cant then I see it as failue and they react with dissapointment. Many time I have truly needed help and they have the expectation that I should be past that. One day at a time and take each step with the Lord..... Never ever give up hope. It is so hard because none of us would have chosen this. If we expend all our energy on why me. there is no energy left to achieve. One day one step at a time.......

[Farrell]

Jessica & Josh ~

 

Jessica please take comfort in knowing what you are going through is not

a spell you can not just click your fingers together & be better. God had you live for

a reason. In whatsoever state you are in , You are alive! :friends: It takes a long

time to go forward but the Lord knows you are one who can go forward...I have a

friend here in our little town that had a stroke during or after the birth of her child.

She already had a son. (SHe had an AVM artery vein malformation) like me, But

she & her family chose to not remove it. She wears a left side brace on her hand

& leg brace. She drives in our small little town. Her hand is still paralyzed somewhat.

& leg but she cares for her children & family. SHe's different from the brain damage

but they are adajusting. This happened 16 yrs. ago. She just had another baby last

yr. aganst her Drs. recomendation. Everything went well. LIfe does not stop but

it does change. So my heart & prayers go out to you. I pray they can find the right

seizure med to put you on. I tried dilatntin @ first but didn't agree w/ me. To drive

I have to take seizure med.( I take Tegratol 2oomg. 2x a day & Klonopin 0.5 mg

break in half 2 x a day) I also have a wonderful husband to support me & thankfully

he loves to cook on the weekends. During the week he lines me up w/ what to make

as I improved after a year. was in a nursing home where they had 2 P.T. the first 4

mos. out of ICU to get stonger for the operation to removed AVM. They then sent me to

in-patient care @ hospital. My Avm was in executive part of brain so had to relearn

all skills, reading,writing,organize(which I still don't have & memory) ect. Then had

in-home health care, & after that got stronger to go to out-patient therapy for 1 1/2

years. Still do my exercies & stretches in the pool. Seem like a hard row to go but

I believe in you Jessica W/ the help of your wondrful husbad Josh & older children.

But my husband had to remind my older daughte to still enjoy being a kid... You

can do IT! :friends: :happydance: Go Girl Go!!!!

 

Josh thanks for reaching out for help! We all feel blessed to be of help & support

where needed. Take what you want if it applies then thow the rest out the window.

Everyone on this site want to be of help & are very caring people!!!! :Clap-Hands:

You can do it! Hope you have a safe New Year & God will bring the help where

& how to get it...you are a wonderful Dad & husband...in a difficult situation...

 

In prayer ~ Nancy & family

[Guest bessy]

jessica and josh if not 4 my kids hubby i would not be where i am 2 day i will say i get my strength from them if it were not 4 them there would be no me in fact they were the 1s who found stroke net 4 me and taught me how 2 use the computer im still trying mety best on it

we have 2 grab the bull by the horn and take our lifes in 2 our own hands with the hopew all goes ok it sure is nice 2 wake up and smell the flowers as they bloom in spring which here is not far off hope fully glad 2 see u posting looking foward 2 see more posts as well as meeting u soon i hope

 

 

 

BESSY :big_grin:

[Honda Daddy]

I am sorry to hear of your wife's health issues. The sad thing is that there is no magical thing that you can say that will "make her snap out of it". She needs you and her family with her. She needs to hear how you all love and care for her. She needs to be validated in her feelings. Be patient and kind with her and that will go a long way. As a care giver, you also need to be validated in your feelings. Make certain that you are taking care of yourself during this time, as it is very easy to become co-dependent and begin to "own" her illness.

 

Good luck.