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Seeking Advice From Other Caregiver Parents

mikeysmom1
0 Recommendations

I was just reading over"Life & Choices",posted by SirVab in Health Matters.I keep wondering why, if Tony and his family could survive,even though they had few resources, why many of the Rehab Professionals in Portland,Oregon feel that it would be so unthinkable for my 21 year old quad son & I to "tough" this new battle out together. Many of the therapists have encouraged Michael and I to work our daily routine through so that we will be prepared when he is released from rehab in about 6 more weeks. But, we seem to keep running into" roadblocks" from the social service workers who imply that it would be easier for everyone to just put him into Adult Foster Care. We both realize that each day will be a new learning experience and much of it will be hard work. But, it will also require Teamwork from both of us. He has made huge strides in the last month-not vent dependent, gaining strength in his right arm,propelling his power chair on his own, gaining longer balance times when sitting up, and even getting a tiny bit of control of his right hand. I just wonder if some of the other caregiver parents can give us a little advice. How can total strangers give him better care then someone who really is concerned for his whole wellbeing?

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Counseling Depression

25 replies

DLV

Hi Mikeysmom,

I can't believe they are trying to discourage you from taking your son home!

My son is a 19 yr old quad who lives at home at home with me and his Dad. I guess I could be considered his primary caregiver. My husband picks up some of his cares on the weekend when he is not at work. It is really not that hard. I guess you could relate it to when they were babies. Taking care of a baby is not physically hard work but it is time consuming. When my son first came home from inpatient rehab it definately was a little overwelming. We were so afraid we would forget to do something or do something wrong. My son has been home for 11 months and now his care has become second nature. I believe you are right... you son will get much better care if he is at home. I would spend as much time at the hospital with your son as possible learning how to take care of him. Have the medical staff teach you how to cath him and do his bowel program. Have the PT's teach you and others in your family how to properly transfer your son in and out of bed. Learn how to tell if he is seated correctly in his chair. Learn what to do if he exhibits signs of AD. Then start doing these things while he is still in rehab so you will be comfortable doing them when you bring him home. From reading your post it sounds like your son has come a long way already. His injury is so new, it is too early for anyone to determine where his recovery will take him.

Please feel free to send me a pm.

chales

i agree with the previous poster--while i am the spouse of a quad-its not too difficult as the social workers are making it seem-as long as you know how to do the bowel programs and how to cath him-you're pretty good!
i do pay a nurse 17 per hour to come for 3 hours in the morning to do all that stuff for my husband (being that i have 4 girls under the age of 10 to take care of too!) and then i only have to cath him once at 330 and give meds, then i have someone put him back in bed for me at night and stretch him-then i hook him up on an all night cath and we are good to go...

pattyacarpenter

My son was 23 years old when he had a diving accident that left him C5 quadraplegic in December 2005. It was such a nightmare going through all the unknowns and gettiig him out of the hospital. I learned to concentrate on one thing at a time, take a day at a time and most importantly, concentrate on getting him well enough to come home. I couldn't think about what I had to do to take care of him when he got to come home. He went through extensive physcial therarpy and when he was finally well enough to come home, I was still not prepared, but was ready to learn and do whatever it took to care for him and support him.
No one knows how a mother feels when it comes to doing everything you can for your child, not even your family or friends. Many of them thought I should put him in a Nursing Home because of what I had to do for him. I could not believe I was hearing this from my loved ones and always repsonded "absolutely NOT" . Thank God, I retired in September 2005 and was able to be at home with him. Each day gets better and it gets to a point where you just do what you have to do to get your child to be an independent as possible. Thinking back, I thought I would never feel as comfortable as I am today taking care of him. I do have a nurse aide to provide me relief in the day so I can do things that I need to do. Some days it is pretty tiring, but not working, I can rest when needed.
It will be 2 years coming up this December and he has now got his drivers license and is looking to go back to work and relocate to the college town he was living in before his accident. I am ready to let him go because I know I have done all that I can for him at this point. I think a mother is there to get him through all the medical issues, therarpy, doctor visits and the numerous contacts for resources....I've done my part and now it's up to my son to go from here. I'll never know how he'll do on his own until he tries, but of course, I'll always be here if he needs me.

jesse_blue

I would like to give you metal of courage. Parents like you are worth a million. We have our son who is only 8 with C-1 injury and we know, how hard it is to take care of a disable son. Just let me tell you that keep him with you and don't let the SS make decision for you. First try and give 110% and if you feel that you can't do it. Ask for help there are lots of people that have great hearts, and willing to help others we know we been bless we so many of them. Also try to learn as mush as you can of his care. And you will do great and every thing will go good. Bless you all and take care of each other and your self.

jpmom

I know I will probably be repeating what others have said, but can only say listen to your heart and bring your son home if you are able to. My son was injured almost six years ago at 19, and is a C4-5 quad. He rehabed at Shepherd Center in Atlanta. During his inpatient stay we learned how to cath him and do the bowel care almost immediately. Family members were encouraged to participate in PT and OT, we were given education on my son's care as well as the assistance of a counselor. We were grieving terribly, but the support we received brought us through that and gave us the tools necessary to go on. During my son's four weeks of outpatient care we lived together in an apartment provided by Shepherd. My son went to therapy by day; I provided care by night and weekends. Upon our return home to Massachusetts we were as prepared as we could be at that point.

Because my husband and I both work and my son is a young adult seeking independence, we have both nursing and PCA care daily, primarily in the morning to get him up and in the evening to get him into bed. We still manage his care and remain on top of it all because the best laid plans often fall through and one never knows when it will be your day to provide it all :-)

The decision as to whether a group home, adult foster care, assisted living would be appropriate was just never a part of our discussion from the earliest point on. We were prepared well by the Shepherd Center, and have never regretted our decision to bring our son home. In the intervening years we have recently (it's almost ready) added an apartment onto our home for him so that he can achieve some level of independence while still having us available to him. While it is difficult to sometimes see any positive side of such a devastating injury, we were fortunate that he was well insured at the time of his accident and we chose the best rehab facility available to us and this has helped tremendously ... we learned that even with that you have to push, push and push for your needs! Having your son home is the best thing ... but having good personal help is also critical for yourself as well as your son.

Good luck in your journey and God Bless!
Paula

nickdecrease

No question about it - TAKE HIM HOME. Family and positive support will help him move forward faster and with more confidence.

My parents brought me home, and if it were not for their positive attitudes I'd not want to keep going. They keep my spirits up and love me more than any nursing staff could.

wendy0523

My son was ina car accident on July 16,2006 and is now a C6 quad who is now walking somewhat with a walker, he still uses his wheelchair because he gets tired out pretty easy. When he first came home I took care of him all by myself with no help from anyone because help around this little county was pretty scarce.It was alot of work concidering my son is 6'5" and I am only 5'5". It wasnt easy but we both did it and there were times I prayed to God to give me the strength to keep going and he did and now my son is doing everything on his own including cooking for himself when he wants to otherwise it's mom's cooking.From the first day I told the Dr's I was gonna be the one that was gonna take care of him.Putting him in a nursing home was not an option because I have worked in nursing homes as a CNA and they are under staffed and the patients dont get the attention they need.I had no problems with the hospital releasing him.the hospital he was in was really great and very helpful to us.So take one day at a time and don't worry you're doing a great job with him and it will get easier. Keep up the great job

mikeysmom1

I will begin training with my son this week during his rehab sessions at RIO in Portland, OR. I feel fairly confident that I can handle his physical needs as far as transfers, bowel training, stretches and positioning,etc. are concerned ;but I must admit that his social worker is beginning to "get to me", causing me to ask all of you how to handle the emotional aspects of these injuries. Michael is extremely polite to all of his caregivers at RIO, but when he is alone with any of his family members ,the frustration of all of this is allowed to come out. We understand completely that he really needs to have some way to vent his feelings! But can someone tell me what the best way for his family to react to his outbursts? He insists that he doesn't want any psychological help;so we can't force him to "talk" out his feelings with someone else. But he has always had a lot of low self esteem and the injury has really added to that. I feel like alot of his fear is that his old "friends" will lose interest in him. For the most part,that would be a good thing. If he hadn't been involved with alcohol,etc with most of his so called "friends",he wouldn't be paralyzed now! He fell 20 feet off of a balcony & his "friends" were so drunk and high that they went downstairs,picked him up, carried him up stairs ,then, left him to cry and scream for 2 hours before anyone went for help. They even insisted on calling 911 from a pay phone so no one could trace who was calling because so many of the parties involved were already on probation .The police refuse to prosacute these people because Michael blames himself and will not press charges on them. I am sorry that I am "venting" now, but hope for a little advice how other parents may have handled a situation like this. Thank All of You so much for just being there for each other. I hope some day that Michael and I will find people with similar interests as him so that he will not feel so out of place in this new life that he is beginning .I am hoping that we can find some sort of gathering for others in his situation. Right now, we are just trying to get through the initial rehab;but soon we will both be called upon to face the reality of this all. Thank You Again, Mikeysmom

Bryansmom

Hi Mikey's Mom :)
Reading your post takes me back 3 1/2 yrs ago to the time my now 31yr old son was injured, of all things, in a bicycle accident. He hit a drainage ditch as he was attempting to go around walkers on a public trail and was thrown from his bike. He is a C1-2 vent dependent quad. A LOT of things have happened over that time. He was married at the time so his wife was actually in the primary caregiver position which I have been told from the beginning of our journey should not be. Now that his wife is gone..and he is eligible for 24/7 care, he has aides from caregiving agency and also one of my daughters and myself are employed by him. Medicare pays for these things.
During all this time..like someone else said..we never ONCE thought of putting him in a nursing home. In fact, if you would visit with other sci's..they have told me they would rather be shot dead than deal with that kind of lifestyle! Bryan being on a ventilator...oh man...we can't even trust the local hospital to get the right care with the ventilator!! NO WAY would we put him in a home!!
We had a local charity type organization hold fundraisers and research for grants etc to pay for renovation of his little house at the time of the accident so that he has a separate, huge, w/c accessible area of his house with a roll in shower/handicap bathroom.
Being a much higher up injury is different from your son as far as some choices we made for his needs, such as he has a Superpubic catherter which is attached to his bladder internally and flows into a foley bag and his bowel care is now done by me and it is done every other night. We have to use a sling and a hoyer lift to get him out of bed and into his chair...that is easier as a two person job....but his wife, when he was married and now his sister when she is caregiving him...can do it all by themselves...I CAN..but prefer help. He has to be fed anything he wants to eat. He has no feeling/movement from his neck down and is only able to slightly move his head frontwards or side to side.
I say all that to let you know that Bryan has a high level of care and we kept him at home and we are thankful for his strong faith, strong family, strong God, support from community and church ...and the govt. of course :) It was an adjustment...but it can be done!!
To respond to your other comment about the emotional side of it. I think at first, Bryan..we...were all just thankful he was alive..that he could speak(with a speaking valve of course) and even eat..which they told us in the beginning that he might not be able to! But after a while..Bryan too became very agitated...and released his pent up frustration with his "new normal" life and lack of control of ANYTHING in his life...on his family. Those closest to him.
I guess for a while...his wife could handle that...but said enuf is enuf. And having been on the receiving end of his anger...I know what she had to deal with. BUT..Mom's don't leave!! I love him and there is nothing he could say or do that would make me turn away from him and leave him to fend for himself.
My suggestions to you to handle that behavior...if possible ..both of you..or any family members could get some counseling help...thru church or support groups or sci facilities..wherever. Preferably people who have had experience with your situation. ALSO..I should tell you..besides this website..there are a number of other good sci message boards that I got so much help and support from in the beginning...like New Mobility and Powerquad.net and CareCure. All excellent resources. AND..if your son is a chatter himself...which my Bryan is NOT..he can go online himself and talk with other sci's. There's some amazing, caring, helpful people on there that I have found and have made some very very good friends with!
My main thought for you..and as a mother, I am sure you wll be this way...but when Bryan has an angry spat...I may react but later we both apologize and I always try to put myself in his place and try to understand how that feels...to have totally lost all control of your life...dreams,...hopes...
Biggest problem I think I have as Mom and son..is to do all I do for him..and not make him feel like he's "a baby" :) He's a grown man..and has had to deal with losing his dignity with Mom and other's doing the "intimate" things he once did for himself.
Mikeysmom...It's not easy...but it's possible..And...you may not hear it today...or next month or year...but one day..he will thank you... and you will not regret keeping him at home.

herpam

TAKE YOUR CHILD HOME!!! he needs family support........even if he doesn't say it out loud he needs it............... My son (t-12) was injured in an auto accident in 2006. He has told us that having our support and being home is priceless.........he said he didn't think he would be where he is now if he would not of been home surrounded by love and family....now don't get me wrong it is hard. but we wouldn't change one thing.

Listen to your heart........you know your son.........he is a part of you.

jpmom

Hi again,

Your story breaks my heart, especially at the actions of your son's "friends". It is a miracle that your son survived this accident ... emotional survival beyond this devastating injury is difficult, and speaking from my own experience with my son, the anger is unavoidable and most times justified and speaks to the need to vent. It is difficult to put myself into his shoes, but I know my son lost just everything and that lack of control over the most simple aspects of life seem to trigger his bursts of anger. He had immediate counseling as he rehabed at Shepherd Center, and at home we've had to have some therapeutic intervention for a couple of emergency meltdowns, but he won't go to anything on a regular basis either. He was on antidepressants for a short time, but didn't like them. He has been spending a lot of time on the computer meeting and talking with others and this makes a difference. Although he is a pretty private person, we are able to communicate about some of his feelings and how to cope with them. He was always pretty shy, and all but his closest friend have moved on with their lives. However, he has met some new folks mainly through coming into his life as care providers, so has developed new relationships that way. He also tends to vent most of his anger toward us, but has lost it with care givers just out of pure frustration.

When he "loses it", I just try to leave him alone for a bit (that is hard ... I'm a meddler and problem solver :-) We've been living with this for almost six years and are still learning as is he. I think counseling would be the optimal solution, but one can't be forced to talk it out. As a parent I am in constant worry about his well-being, but as we have progressed through the years there are strengths I have discovered about him that put me in awe. It's all a process, frustrating as can be. The anger can be overwhelming, but it has to come out. He'll have it, you'll have it, it's just unavoidable and it's how you ultimately deal with it. We have found that no one, not even our closest family members, have a real clue as to what we are dealing with except for others who have had the same experience.

There are also support groups ... my son tried that but didn't find it helpful; however, as years have passed he actually seems more ready for that kind of thing now. As I write this I realize how not helpful it may be in solving the issues you describe ... but I wanted you to know you are not alone, we all going through this experience the highs as well as the very, very lows. Take care of yourself as best you can, your son will appreciate your strength even if it doesn't appear that way :-)

Good luck!

toolinon

My son Tony is 23 and a C5-C6 incomplete quad. He's amazing.
We live together and I am his primary caregiver. We have very little help so I am
on duty usually 24/7....
It sounds like you answered your own question to me. How can total strangers give him
better care then someone who really is concerned for his whole wellbeing?

DLV

I would not worry too much about your sons "friends". When some thing like this happens you really find out who your "friends" are. When my son was first injured, kids came to the hospital in droves. By the end of his nine month hospitalization it had trickled down to just a few. However, in their defense, we do live 75 miles from the hospital and these were mostly high school kids. I have really been surprised how some of these kids have rallied around my son since his discharge. They show so much compassion while at the time treating him like he is no different from them. A few of these kids were not "my favorites" prior to his accident but have really been there for him. Others, that I though would always be around, have just faded away.

As far as the outbursts, I think it is just part of adjusting to his situation. We have been really lucky not having to deal with a lot of anger from our son. I think part of it is due to his laid back attitude, which at times prior to his accident was a problem. Now, I think it helps him cope. When he does get frustrated and wants to take it out on me or his dad we tell him that he is not in this situtation because of us and that we would trade places with him if we could and then just walk away. That usually settles him down.

Some say that when you get a sci you go through some of the same emotions as when you have to deal with a death.... grief and then anger over what you have lost. I think that is true and with some it takes longer to get through each stage.

I think one of the best pieces of advice we got in the beginning was to let our son make as many decisions as possible and this would help him feel like he had some control over his life when so many things were out of his control. He was too young to make medical decisions and now leaves most of the medical stuff to us. But letting him decide the simple things has made a difference. Examples: Taking medication; I put his pills on the table in the morning and he decides when to take them. Clothing; We made his closet all shelves and put his clothing on the lower shelves so he can pick out what he wants to wear.

If possible, I would arrange for your son to continue therapy as an out patient in a good sci facility for a couple of reasons. The obvious... continued recovery and problem solving, but also the support from others who have faced the same challenges.

I know this is all overwelming, but it will get better.

HiramN

Hello, I can relate to your story. My Daughter was in a car accident 3 years ago and was left a C4/C5 complete Quad. the Doctors and Nurses all tried to convince me that she would be better off in a Nursing home since they have 24/7 care. The truth is that those places are not suited to get the patient better. All they can do is try to maintain them stable. they are all under staff and the caring involved is not there. I took my Daugther home and although it takes alot out of you it is worht it in the long run. Let me tell you the first two years are the hardest then things start falling in to place. Nothing can replace the love of a parent. always be possitive let him know that the world did not end. He will be able to do just about everything he did before just in a diffrent way. Technology is amazing these days, Voice activated systems allows him to turn things on/off, type on the computer, open doors, answer phone, just about anything. I wish you the best. And if you have any questions or just need to talk I would be willing to help/ listen
My Daugther is now 29 years old and if your son needs some one to talk to or email buddy he can contact her to. Remember The Journey of a thousand miles begins with a single step.
My email is HiramNieves@yahoo.com :)

HiramN

Hello, My heart goes out to you in these trying times. I was also told the same thing about my Daughter. She was in an accident and left as a Quadraplegic three years now. all the Nurses and Doctors told me to put her in a nursing home so she could have 24/7 care. As I'm sure your aware these places are not geared up to improve the patient, they bearly keep them healthy. they are understaff and the carring and concerns are not there. I would not hear of it and took her home. And I'll tell you the first two years are the worst as you both learn to get the routine down. But your son will be better off, he will improve, and thank you for not giving up on him.
My Daughter is now in her third year of Injury and she is doing well Thank God. we travel, go to restaurants, the movies, take in shows. let your son know that live has not stoped, it continues. And he will be able to do all the things he wants to, just in a diffrent way. feel free to ask any questions. We are all in this community together for the well being of our love ones. Understand that the task is a hard one, but well worth the effort. God Bless

mtndreams

I would like to know how your son became eligible for 24/7 cares once his wife left. My son is 8+ years post injury and I have been his primary caregiver. As his Mom I am not sure how he would qualify for this type of coverage. He is a 100% service connected veteran, but with little help from the government. He does receive a financial stipend but we know with the cost of caregivers and also the shortage that his finances would quickly be eaten up trying to cover him 24/7. I ask for strength daily just to get through each day but as I age his cares have taken their toll on me also.

Any advice/direction you can give me would be greatly appreciated.

I would just like for my Son to have the independent life he so desires - and to be able to live knowing he has cares covered (or for the most part).

You can e-mail me at mtndreams719@aol.com of you choose.

Thanks again

FuschiaFan

What is your son's level of injury? Why does he need 24/7 care? Is he getting his VA pension? Aide & Attendance? Is he getting any fee-basis bowel & bladder care? Have you spoken to the social worker at his VA SCI Center (which I assume would be Milwaukee)???

mtndreams

My son is a C4/5 complete quad. His high level of injury leaves him unable to do anything for himself. He does get bowel and bladder allowance through the VA, but where we live has only one agency and one caregiver that is qualified to do his cares - so it makes their reliance sporadic. We have spoken to both social workers my son has had - they offer advice but are of not much help otherwise. It seems a constant battle with the VA to receive what he needs. I live with the constant worry, as does he, of what will happen should something happen to me. And the thought of a nursing home, well as most have commented here - they can hardly take care of the patients they already have. With his level of injury he cannot do anything for himself - so is totally reliant on others to aid him. He had a bad set-back last December and is still recovering from that. I take one day at a time but sometimes that toll is heavy. I was just curious as to how one obtains reliable assistance, because as us caregivers know, we need a break also.

Thanks again for anyr assistance/advice you can give.

FuschiaFan

First of all, he is eligible for up to 4 weeks of respite care at the VAs cost (in a SCI Center or VA nursing home) annually, to give you a break. This can be done at the SCI Center at the same time as his annual eval (which is how we do it).

Secondly at his level, there should be no reason he needs to have someone with him 24/7. None of my C4 veterans do that. Mostly they have someone who comes in the AM and does skin inspection, ROM, bath, bowel care and dressing and get them up into their chair. This should take no more than 3 hours. They are then on their own (except for someone to help them eat which is usually family) until the evening, when someone helps with hygiene and puts them to bed. If you get organized, this should be doable. Does he have an ECU and door opener he can use on his own? Is the exit ramped? Does he have a computer with Dragon Dictate so he is independent in use? Is he going to school, working, volunteering or doing something with his time other than watching TV? Is he using you to do intermittent cath? We don't send people home on intermittent cath who cannot do it themselves as it can be dangerous if AD should occur. There are other options for bladder management. He can also have a Camel Back set up for getting water whenever he needs it (and the VA should buy it).

The VA allows you to have ANYONE certified in bowel and bladder care for fee-basis payment. It does not have to be an agency. We even pay family members, but we prefer to have them given a break and let the veteran find a person they want certified. Certification can be done by the SCI Center or the local SCI support clinic staff. His A&A money is to pay for attendant care, although most people do use some of their tax-free pension to pay for it as well.

mtndreams

The Milwaukee VA allows only 3 weeks of yearly respite at their facility and not during June, July or August. They also do not allow you to add it onto the Annual Exam time - we have tried. Each time my son has been at respite there, he has come home with an additional problem. They provide the best care they know how but are short staffed and use mostly agency nurses who cannot do all the cares.

Matts cares take more than 3 hours each morning, and because of a bad pressure sore last December he can only be in his chair right now approx 5 hours each day, depending on how his other cares go. He has a ECU Unit which currently is waiting to be fixed. Took forever to get VA approval and now waiting for FCC approval of the new phones needed. Yes, frustrating. We live in an apartment so no automatic door opener so he is confined to the apartment unless someone is with him. He does have a computer with Dragon Dictate, currently his computer is in the shop for repairs - so that leaves him needing to use my hands to pay his monthly bills at this time.

The VA approves a Drink Aide which attaches to his wheelchair, but the new ones are smaller and he needs someone to fill that and empty his leg bag.

So my wording of 24/7 is not exactly correct except that my sons schedule changes daily due to his health and sleep pattern. He does not attend school nor volunteer as he has been spending his time trying to get things accomplished through the VA which requires several phone calls almost daily. Took over 14 months to get a wheelchair that he needed, and then it still was not correct. So we had to start the process all over again. Yes, at time frustrating but we keep taking one day at a time.

Thanks for your information, but it shows that all VA's are different.

We look forward to a favorable 2008!

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