What would have helped you most

[MissShannon]

Hi all, I'm feeling a little frustrated at my mother in law who is just being resentful and dragging her feet at helping to take care of my father in law who had a pretty serious brain stem stroke that left him unable to eat, control his blood pressure, etc. So i'm here to turn this energy into something more positive.

I am a nurse in the intensive care, my question is to both the survivors and their families..........what would have helped you most as you navigated your way thru the aftermath of a stroke. I am going to try to put together a little packet describing what a stroke is, communtity and online resources, and anything else you guys may feel would be helpful. Also, as i read thru the postings i sense a great deal of anger towards the medical community, what did they do that frustrated you, and where could we have done better. Oh one more thing, would it be ok to reference some of this material back to the site?

 

Thanks in advance, this site has just been wonderful for me thru this

Shannon

 

[jriva]

 

 

Hi Shannon,

 

What you are proposing to do, the packet to hand out, is something that is sorely needed from what I've seen around here. The small hospital where my husband did his rehab (after being in a large prestigious brain injury hospital and a nursing home) did the very best at stroke-educating me of the three places. They had a social worker assigned to me who gave me bookets about strokes and completely took over the applying for Social Security Disability so that I literally had very little to do but a phone interview. I hadn't fully appreciated how easy he made it for us until I came here and read the horror stories on the board. He also gave us some information on community resources and I wish it had included on-line support.

 

I have resentment towards the pretigious hospital because of their willingness to just write my husband off as "vegetable" with no regard for how callously they throw that word around. I have resentment for the way they really didn't take the time to find out anything about his or my resolve to get well before they tagged him with that word. I have resentment that they even use that word on any stroke survivor when they are less than a week out from their strokes. It's like a kick in the stomach to hear. By the way, if you don't know my story my husband is anything but a vegetable.

 

On your question about referencing this site for material you find here, crediting the source of material is a biggie for me, no matter what you are doing in life. So it gets my vote. You should sent a to PM smallory, though, with your question about what and how much material you want to use from here.

 

Jean

[Guest lwisman]

Just want to say that Jean is correct. To use data on the board or data in any Stroke Network publication you must have permission. Permission is usually given and you are asked to give recognition to The Stroke Network.

 

Lin Wisman

Director Information Resources

[2ndChance]

As a survivor, I had phenomenal experiences with all my medical encounters. Of course I also live in a large metropolitan area and was treated at an ASA certified stroke center teaching hospital. I sometimes wonder how much attitude has to do with anger toward medical treatment. It seems to me that those who express anger on this board often do so because they were not told what they wanted to hear from the medical community.

 

I think survivors & caregivers need tio be told to apply for disability benefits IMMEDIATELY. Do not wait to see what the prognosis may be. None of us will live long enough to "recover." The survivor needs to get into the system as soon as possible. If the survivor can return to their job, then they can decline the benefits, but best to be in the system.

 

Rene

[door60]

What I feel the medical community lacks is understanding that stroke patients continue to recover way after 3 weeks, and should encourage the families of this news, and the therapists. My mother, for example needed to convales before beginning therapy, and the therapists wanted her to start right away, and when she refused, they tried to terminate therapy. Eventually after my mother rested for several weeks, she was able to get into therapy.

[arogers]

Hi Shannon,

 

Thanks for taking the time and energy to contact the strokenet. As caregiver to my husband, who survived two strokes - 5 months apart - I have several thoughts I'd like to share.

 

1. Since coming here I've discovered that a 2nd stroke within several months is not uncommon. If I had been informed of this, I would have been much more proactive at the time my husband had his 2nd and possibly the outcome would have been different. The medical community could have informed me - but they didn't.

 

2. I resent the fact that I was treated as a 2nd class citizen - a mere mortal who didn't have the capability to comprehend their plans, so rather than truly involve me, I was told what would be done regarding my husband's discharge from rehab.

 

3. With the initial misdiagnosis of spinal meningitis at the time of his 1st stroke, and the label of a man who was "uncooperative" at ER is another story all together.....

 

 

4. I don't know how old your in-laws are, but your mother-in-law may be more confused and frightened than "resentful and dragging her feet" in caring for your father-in-law. Of course she is resentful - her life has been forever changed too.

 

I believe your concept of providing a packet of information is a good one. I hope all goes well with your plans.

 

Regards,

 

[Guest joy]

Hello, Shannon,

 

Thank God for someone who is willing to put together information for families of stroke survivors and caregivers. I agree with everything said in the above posts. The doctors and nurses who treated my husband would answer my questions - BUT - I didn't know enough questions to ask to get the information I needed to care for my husband. I have gained more from this site than from the medical field. That is frustrating. Also, the "social services" part of the recovery is not explained sufficiently. The discharge planners came to us but as was stated above - their only solution was nursing home for the rest of his life (which they did not expect to be long) Well, here we are almost two years later - after a two month stay in the hospital, four months in the nursing facility - at home and doing relatively well. Someone at the hospitals needs to be fully familiar with the provisions of the state they are in as to what is available for families not wanting to warehouse their person in a nursing facility.

 

Again, God bless you for taking the time and energy to do this. I am sure many many families and survivors will benefit from it.

 

Joy

[bstockman]

I agree, I think more helpul information is need for the families,

what comes next, PT and applying for benefits.

Something written comphrensively for families on basics of what to expect (possibiities) emotional liability, what to be expected...

maybe an evaluation form ...telling the family what the survivor can and can't do, Dr. told my husband to have someone with me (in the room) when I was taking a shower ...the warm water could..I could possibly pass out. told I needed a shower chair. Just kind of basic easy information.

 

Families are scared too and all of a sudden have someone needing help

and they are sent home..........

 

Bonnie

[Toni]

When my husband had his stroke in Feb. 04, we were very luck to be living so close to a regional cardiovascular center. He got excellent care within the ER and ICU. Now their telemetry unit was the pits. Luckily he only spent a week at that hospital and then was transferred to a rehab unit at another hospital, where again it was wonderful care in the rehab unit for the most part. He ended up back in their ICU with some internal bleeding, which I think was caused by the insertion of a NG tube at the first hospital and taking heparin didn't help that matter. Again at this second hospital, the ICU was terrific, but the medical floor awful. Fortunately it wasn't long before he was back onto the rehab unit. Through out all of this experience (again luckily only 3 weeks total) all of my questions were answered. Again fortunately, I knew what questions to ask. I am an occupational therapy assistant, so that helped. I think too it helped that I was very willing and able to do most of his care while in the hospital. We were again fortunate that his PT in the rehab was a student. This guy was the best there is. And again another stroke of luck, his (the PT's) rotation was up in rehab when my husband was discharged and his next assignment...the outpatient facility my husband went to!!

 

I do agree though that the social services part of this was non-existant. And if I wouldn't have had the knowledge and background in rehab, we would have been left out to float. I see that with my work in the school district, my special ed kids whose parent's are informed and involved get better service, not fair, but true!

 

I would have welcomed a pamplet of some kind when he was admitted to rehab, telling me even basic things to expect. Simple things like what time are meals, and then a listing of outside services. I know that from a pediatric standpoint there are hundreds of places out there, but don't have a clue for adult services.

 

thanks,

Toni

[swilkinson]

In Australia it differs from state to state what information you are given, what the social worker or discharge nurse tells you, what access to post hospital treatment you are given. Here in New South Wales it is almost an official secret that there are such things as Outreach Rehab teams and doctors referrals to physio, occupational therapy etc. As each state has it's own health system although they are federally funded it is dependent on what the treasury officials think the budget for health should be.

 

What I would like to see is:

 

1) All rehab - occupational therapy, physicians and specialists appointment, mental health and Daycare programs all arranged from hospital, so the carer doesn't spend the next six weeks begging for appointments.

 

2) A lending system for chairs, toilet aids, oxygen bottles,bathchairs etc so you could try them out and see what is best for your survivor. Preferably all rails and ramps should be constructed during the hospitalization period too so coming home is easier to manage.

 

3) Access to the medical information needed to decipher medical charts, discharge papers etc. Information on what the pills do and what the results are expected to be, results of all xrays, tests and treatment given in the hospital. What future problems may come up and how to recognise symptoms. How to do simple things like how to safely lift your survivor after falls.

 

4) Access to counselling for the caregiver. Access to "time out programs", more generous weekend respite (remember weekends caregivers?), provision of information on respite services wherever you live, disability parking, toilets, whatever you need to simply get out of the house.

 

5) Education - starting with school children - on how to treat a person with disabilities so they don't feel less than a full citizen. A community that cares about the individual whatever their abilities sure would be a wonderful place to live.

 

I could go on and on, based on the experiences of six years as a caregiver but I guess I have to give someone else a turn.

 

Cheers, Sue.

[Kj mcmeekin]

Hi Shannon:

 

You may have opened Pandora's Box, but I think it's great what your trying to do. My husband is 1 year post stroke. He was 50 when he stroked.

 

Many things pis--- me off. When he was in the hospital it was like trying to pull teeth to get doctors to return phone calls to answer questions. My husband was at a teaching hospital and I had to deal with alot of residents. The residents would make decisions in regards to medication or tests, the nurse's would tell me what was ordered and the next day when I asked about test results I would be told that this or that never took place because the chief resident would cancel them. I don't think residents should be allowed to make such decisions.

 

Shortly after his stroke the doctors told me that he would never be able to do anything again. Basically he would sit in his wheelchair or lay in bed. He would basically live as a vegatable. Well the first year was somewhat like that but now he is starting to make great improvement. I don't think professionals should make such final decisions - as I found out, maybe it may take awhile but things can and do change.

 

I don't think professionals should tell families what they have to do in regards to a person coming home after stroke or going into a nursing home. My husbands neurologist told me that he was to go to a nursing home because I would never be able to handle him. So I believed him and he went to a home 1 1/2 hours away from where we lived. The nursing home did absolutely nothing for him in regards to recovery. I fought until I was "blue in the face" to bring him home which I did 2 months ago. As I previously said now in just 8 short weeks he is making incredible improvement.

 

Finally - I as the spouse was really left in the dark about alot of different things when he was in the hospital and the nursing home. Decisions where made without discussing it with me first. In an non-emergency basis, if the survivor cannot make decisions I thought the spouse had to be contacted to make that decision. I have POA and this was not done.

 

Kim