My father had a stroke on dec 5 2005.He is 62 years old.When I went in to see him in ICU he was a person I did not know.It was heartbreaking.The next day he was improving he knew who I was.Everyday was a big improvement.He is now in a rehab hospital in Boston.I seen him yesterday and he is still the same as he was 5 days prior.I do not know much about strokes and I was so discouraged yesterday (wondering if he stay's this way)
but I know its only been 2 weeks and recovery can take along time.I am glad of this web page maybe someone can give me some hope.I cannot get in touch with his doctors,they do not return phone calls.I do know this he is not paralized and he cannot see.( he isnt totally blind).He can have a conversation and then he drifts off into another world.he is confused and frustrated.I hope that he recovers,he's the only parent I have left.I love him so much.
Dear Cushing: I've been a social worker working with neurologically impaired persons (traumatic brain injury, stroke, Parkinson's, etc.) for the past twenty yrs. I also am assigned to the rehab unit of the trauma hospital where I work. So, let me tell you a little bit. First of all, and maybe most importantly, understand that the condition of your father is in now is not the condition he will be in when all of this is over.
Second, all of this may not be over for another year. Generally, the rule is 3 days post-stroke, three weeks post-stroke, 3 months post-stroke, 6 months post-stroke, and 12 months post-stroke are the time-lines to measure his recovery. That he is a rehab hospital is a good sign - it means that his endurance is sufficient to be able to handle the three hours or more of therapy they provide him. Also, it appears as though he is able to follow directions, which is also good.
Did your father live alone? How much family support is there for him or yourself? (are their other siblings who can help out during this time?)
That the doctors won't return your calls is nothing new. WHile it's horrible for you, you need to find out who on his therapy team is going to be your "point person" and that will probably be the social worker or case manager. You may want to schedule a Famly Conference at which time you, his team, and the rehab doctor can discuss your father's care, discharge plan, etc. By the way, what is the plan for him when he leave the rehab center? (He is at Spaulding, by any chance?) chris
Yes he is at spaulding.He does live alone and when he gets through this I want him to live with me.He has 5 sisters who have been by his side this whole time,he has alot of support from the family.I however do not have any sisters who are sober enough to support me.I do know who his case manager is and have tried to call her and could not get through and no call returned.My whole plan was to set up a meeting I'm having no luck in getting in touch,so my aunt is going to call.I'm an emotional mess.I am so worried about him.Thank you so much for you positive reply I need that.
DEar Cushing: Is living with you reasonable? Do you work outside the home or are his sisters able to supplement the care you provide? There are so many questions you will need ask once you get in touch with the case manager...Are you in Boston, as well? How many days has your father been at Spaulding? (Since the case manager is going to be able to help you in so many ways, you need to have that person contact you ASAP. If you haven't heard from them yet, you need to start raising a little ruckas. YOu can't ask questions or get answers until you start talking to someone. --chris (I'm still thinking about you...let me know what's going on.)
I raised ruckas yesterday and she called me back,I was told he is going to be discharged in 4 weeks.They want to place him in a nursing home rehab.( is this normal)I
have concerns about this.I want him in the best place possible.I live in southern NH(40 min from boston).I want him near me.
My schedule allows me to spend all the time i need to with him,my aunts cannot do that.his case worker said I would be the contact person and she apoligized about contacting others 1st. I'm so glad for that.
He has been at spaulding about 8 days.My dad is so great,I would
be lost without him.My mom died of cancer when I was 12.He raised
all 5 of us by himself.He is an amazing man.I wish everyone could know him.
Dear Cushing: It is not unusual to consider nursing home placement following rehab for a stroke IF there is no one to provide the care for him at home. So, let's look at a couple of questions that you may want to address with the case manager:
1) Are there weekly team meetings (usually there are)? Can you attend? ANd, do they have a team conference report that is available to you? You may not be able to attend the team meeting, but you could request a family conference in which you, the team, the teating physician and the case manager are present in which you can discuss his progress, obstacles to discharge to home, and discharge plan.
2) since you're only 40 minutes away, you may want to find out if there is a chance for you to attend "family training". In my rehab unit, we encourage families to attend training (meaing that you would follow your father's schedule through his various therapy sessions). The purpose is that you really don't know how much you can handle unless you actually provide the hands-on assistance he will need upon discharge. I always encourage family members to attend training as many times as they are comfortable in order to better prepare the patient for going home.
3) You will want to know what obstacles the therapy staff are seeing. FOr example: is he continent? Does he wander? Can he transfer on and off a toilet with minimal or moderate assistance (minimal assist mean that he is doing 75% of the work and moderate assistance means that he is doing 50% of the work). What assistive device is he using to ambulate? Can he ambulate? Please note that all of this may be a little premature. But you do have the right and the need to keep on top of this situation. And there are a ton of questions I can provide you at anothe posting.
4) Let's suppose that he does need to continue his therapy at the nursing home level, you'll need to know what his insurance is, and what his benefits for skilled nursing care are. ANd, you'll also need to know what are his benefits for acute rehab AND whether the skilled care benefits and the acute care benefits are all rolled into one. For example, some people have insurance that will provide 60 days of acute rehab and 60 days of skilled nursing home care. And, some policies will roll the sixty days into one benefit package.
5) Moving him to a facility (skilled nursing facility or snf) close to you is absolutely appropriate. However, you'll need to find out what facilities are in his insurance network, visit them, and whether they have beds available. But, we can discuss this later.
6) If he is able to return to your home to recuperate, you need to understand that he's not done, yet. He will need to continue his therapy either at home with home health care or in outpatient setting (mean that he lives at home with someone and then is transported to an outpatient clinic). Home Health Care is enormously convenient but the home health care therapists don't bring the gym home with him. Again, this is something we can discuss later.
I'm really glad that you were able to stir the case manager out of her lethargy. STay in contact with her, even everyday if you have to. Oh, about the Team Conference Report, she should be able to fax or e-mail it to you. Otherwise, for the time being, keep in touch. KNow that you father (and you) are in my thoughts and prayers and let me know what else I can do to help. chris
You have such a big help to me.I cannot thank you enough,you have no idea how much I appricate all your answers.Thank you again.You are a blessing to many people I'm sure of it.
The case worker is faxing over the report to me on friday.I'll keep in touch. Have a wonderful xmas. God Bless. Debbie.
I Am Sorry To Hear About Your Dad. My Dad Has Suffered 3 Strokes And Is Paralyzed On One Side. We Seem To Have Alot In Common, As My Mom Died In 1980 When I Was 14, So I Too Was Very Close With Dad. I Have Two Sisters. The Oldest Is 15 Years Older Than Me And The Middle Is 10 Years Older Than Me, So When My Mom Died It Was Just Him And I, So There Is A Different Bond Between Him And I Then There Is With My Sisters.
I Felt Very Guilty Getting Married And Leaving Him, But Luckily His Girlfriend Lived Right Next Door And Took Very Good Care Of Him. 3 Years Ago This March She Has Been Deceased. I Begged Dad To Come To My House And He Cried And Cried. He Wanted To Be Home. Upon Having Mutual Discussions With My Boss, He Warned Me Not To Take Him Or Live With Him, That I Would Regret It.. I Told Him There Would Be No Way I Would And That We Had A Special Bond.
Soooo, Once His Girlfriend Passed Away, We Sold Our House And Moved Here. The Kids Had To Switch Schools And Everything. He Didn't Care Because Everything Is All About Him. That Is How They Get. To Be Quite Honest With You, I Really Wish I Listened To My Boss. There Are Days I Am Just About In Tears. The Older They Get The More Demanding They Get Because They Are Losing More And More Control.
Last New Years Eve Dad Started Choking And Couldn't Swallow Anything And Was Vomitting Bile And Phlemg. I Immediately Called 911. He Was Refusing To Go To The Hospital. The Ambulance Girl Was Not Leaving Until He Went, She Thought He Was In Conjestive Heart Failure. He Finally Agreed To Go, But It Was Not Easy.
They Discharged Him The Next Day And Said It Was Something Gastric. Mind You They Didn't Do Any Tests Because It Was So Close To The Holiday. So In Feb. I Took Him To Reg. Md Who Set Up Some Tests He Wanted Done. Appointments All Set And Everything. Dad Decided And Told Me That He Knew What Was Best For Him And Wasn't Going.
In April He Started The Same Thing Again But It Wasn't As Bad As The One In Dec., But He Asked If I Would Call The Doctor And Reschedule These Tests. At This Point I Was Ready To Ring His Neck Because The Day I Brought Him In Feb. We Spent 4 Hours In The Doctors Office Straightning Everything Out. I Called The Doctor On A Monday, But Dad Seemed Better So I Didn't Push The Issue. By Wednesday, Dad Asked If I Ever Got In Touch With The Doctor Becuase He Didn't Think He Was Going To Make It Through The Night. I Still Don't Know Why He Said That.
I Called The Doctor Again And They Tried To Blow Me Off Again. I Demanded To Talk To The Doctor. The Doctor Suggested Admitting To Hospital For Tests And Sending Him Home The Next Day. Now Mind You, He Gave No Arguement And Was In No Pain At That Time. I Was Totally Shocked.
To Make A Long Story Short, He Ended Up Developing Septic Shock When He Was In The Emergency Room For Only About 7 Hours. Before He Even Got Admitted To His Room He Was Basically Dead. He Ended Up Having To Have A Resperator Put In, A Superpubic Tube And A Feeding Tube. The Feeding Tube Has Since Been Removed.
From The Hospital He Went To An Inpatient Rehab Facility For About 3 Months. When He First Got There They Had To Use A Hoist To Get Him In And Out Of Bed. We Really Thought We Lost Him. I Can't Tell You What Was Going Through My Mind When He Had That Feeding Tube And Taking Him Home. It Was Awful, Just Plain Awful.
But Let Me Tell You, He Is Stronger Nowthen He Was When He Went In. But Please Be Very Very Sure You Want To Be A Primary Care Giver. I Am Not Sure How Old You Are, I Am 39. I Have Two Small Boys And A Husband And We Can't Do Anything. We Don't Take Vacations We Fight All The Time. My Father Has Become Very Defiant And Controlling. The Rehab Center Told Me They Had A Permanent Bed For Him. My Sisters Wanted Me To Leave Him There As Well. I Insisted On Bringing Him Home. Now He Controlling My Life Again And Making Everyone Miserable. I Would Never Tell You Not To Do It, Because You May Regret It Down The Road. But You Also May Regret Doing It.
You Will Probably Be Offered The Vna Once He Is Discharged. Don't Let Your Dad Tell You No. It Is Free Service Covered By Medicare. If You Don't Take It Upon His Discharge, You Won't Be Able To Get It Covered. I Now Have The Vna 7 Days A Week Becauase He Still Has That Super Pubic Tube. It Is All Covered By Medicare 100%. Don't Give That Benefit Up.
What I Was Always Told Is That They Will Gain The Most Back In The First 6 Months After The Stroke. But It Is Alot Of Work. They Have To Work Harder Than They Probably Ever Had To. Exercise Everyday. It Is A Definate Use It Or Lose It, Which Is Why My Dad Ended Up So Bad. He Was Laid Up With A Resperator For Over A Week. Couldn't Use His Swallowing Muscles Which Were Weak To Begin With.
My Fathers Stroke Was On The Right Side, Which Effected The Left Side Of His Body. What Side Was Your Dad's On?
I appoligize for the late reply,I have'nt been able to get on line in 2 weeks.I am 36 years old and have 2 boys and a husband.Im so sorry for what you have been through.I just got back from seeing my dad and he has made a huge inprovement.he is walking a bit feeding himself he isnt seeing fully yet,but I hope he will.To answer your question the stroke happened on his right side.He has made such a big change i cant beleive it.I'll keep in touch Debbie
sorry I seemed to rush in my last response,I read you letter again and I thank you for your input on being the pc for my dad,I have been doing alot of thinking,I know that I made hasty decisions in that I would care for him in the beginning of all of this.I am going to have to think about all of what you have said.I wish the best for you and hope you and your husband can come together and not fight so much.If you ever need to vent you can write to me anytime. just remember if i dont reply its because my computer isnt working again ...and I'll get on line again asap thanks karen best wishes debbie.
my computer crashed,it's good now but who knows when it will happen next.I seen my dad today.He is doing great.I cannot beleive the improvement.He says that spaulding really pushes him.Anyway I talk with his caseworker 1-2 times a week and she is very helpfull.She mentioned his working memory and said that that was poor,I do not understand what that is.I guess I should of asked at the time she spoke of it but she was telling me so much I did'nt.Do you know? thanks Debbie
Debbie, my mother passed away 8 years ago from a stroke. I was pregnant with my first child at the time. Actually she had a series of small strokes that led up to a fairly significant stroke. Her stroke was on the left side of her brain which affected everything on the right side. It also affected her speech. It was November when she had the stroke, actually she was in the hospital. She seemed to be improving, but unfortunately she had either a stroke or heartattack in her hospital bed the end of January, and passed away. When my mother was healthy she said to me if she ever had a stroke (her mother died of a massive one) she wanted it to be THE BIG ONE. So when this stroke debilitated her to the point where she could do nothing for herself, my heart was broken for her. When she actually passed away peacefully, although painful, I was happy for her. I had always offered to have her live with me (my DH and I) when she was older. Somehow when our older parents are healthy, we don't really see how complicated things can get. I knew being 3 months pregnant and my mother being larger (170lbs) I couldn't do all that needed to be done for her. My mom looked after her ailing parents until they both passed away, then after 12 years of dating my father they married. I don't think that she ever wanted that for her daughters, but we would have done anything for her. I hope you father continues to improve. Celebrate each little victory and tell him you love him every minute you get. My father passed away when I was 21, so although I wasn't as young as you I can relate to the bond we had with my Mom. I will be thinking of you.
Last edited by MuskokaMommy; 01-01-2006 at 01:00 PM.
Debbie: Sorry to have been away from this for the past couple of days. I'm not sure what she means about "working memory" so I'll ask the speech pathologists in the mornign when I get to work. Here's what I think, however: we speak of 'executive funtioning.' Executive funtions are things like: maintaining a schedule, following directions, keeping a budget, etc. Have you had a chance to talk with the speech pathologists? He/she's the person that will be working in that are in your father's recovery. When you do speak with the speech person ask about: visual learning problems, short term vs long term memory, safety and self-monitoring issues, comprehension issues. I'll be in touch via this site tomorrow (1/02/06). Hang in there. chris
Debbie: a follow-up from my previous posting. I was right. When speech therapists talk about "working memory" they are talking about cognitive ability to put things together ie: a schedule of events, a sequence of appointments, etc. It is that higher level executive functioning skill that have become impaired (based on the information provided.) The speech/language pathologist (SLP) will attempt to teach strategies to over-come these issues. Also, for example, they may have him attempt to prepare a lunch not only to evaluate his sequencing skills but also, and more importantly, to evaluate his safety skills (is he ok in the kitche?, for example. Does he leave the burner on? Does he attempt to remove a hot pan without a glove? Hope this helps. chris
I'm back with more questions.My dad has a discharge date as of 1-17 as you know he will go to a SNF.I have a list of places and honestly I am scared to death that he is going to be left there to rot.I'm hearing horror stories of these " nursing homes".I talked to him and he does'nt want to be in a place that is not going to work with him.He does'nt want to be sitting around.What are my options?I know I can tour these places and what if I do not like any of them?Can he stay put until we find the right place?Do you know of any great places in the boston area?Thank you chris.
Cushing: I've been thinking about you... Yes, you absolutely have to check out the nursing homes before you place your father into one. You may want to go on-line and look up the nursing homes listed (the one's you have been given) because there should be an on-line site that will give you their ratings. If there is an "Area on Aging" in the area, you may want to call them. Also, Massachusettes should have a "Long-Term Care Ombudsman Council" that can help you with any complaints.
In addition, there are multiple questions you should be asking when you tour the facilities. And I will put together a list for you for posting tomorrow. Also, you said that you live in New Hampshire, right? Are there facilities close to you that you can maintain close contact with your father?
If you don't like the facilities you've toured,then you cannot, morally and ethically, (besides the fact that it's your Dad) place him in these facilities. He should be able to stay where he is until you find the place that's suitable,but I don't know how much they'll push for you to make a decision.
I don't know any places in the Boston area but, again, I would go-on line to find the place that's suitable. PS THey may not let this slip past the moderator but you can feel free to call me tomorrow (I'll be there from 7:30 - 4 ish) at 727-893-6980. It's my direct line...give me some time to do some research, OK. And, if I'm no the office, leave a number where i can reach you. chris