The truth is…I never thought this day would come. Nearly two years ago, my mom had a massive stroke, leaving her right-side paralyzed with a loss of speech. The stroke was caused by severe artery diseases in which one of her corotoid arteries is 100% blocked, and the other about 70% blocked. She was previously not aware of the disease and needless to say, her stroke was shocking to everyone. The doctors were not too optimistic about how much recovery she would make because the brain damage had been so severe. While her recovery is mostly on target with what was predicted (she regained some of her mobility back and got about 30-40% of her speech back)- one thing is for sure- no one ever thought it would be possible for my mother to drive again.
But my mother is, if anything, the single most determined woman I have ever met. Seriously, once she sets her mind to something, good or bad, that is it. If her illness were just a matter of mind of matter; she would be hiking up a mountain screaming at the top of her lungs by now. One thing that she did hold on too though, even from the beginning, is that she was going to drive again. Of course, nobody entertained the idea, lest of all me, considering I couldn’t even leave her alone in the house for the first 6 months or so. But she continued with her therapy, gained more independence, and slowly but surely got closer to her quest of driving. She signed up for free lessons with a fully outfitted car, a great service provided by the Connecticut DMV. A lady came to her house 2-3 times a week for as long as it took for my mom to relearn how to drive enough to be professionally evaluated. While my mom was absolutely over the moon about these “driving lessons”, I was in full panic mode. Of course I wanted her to have her independence but I was just completely freaked out about her safety. I just didn’t see how it was possible, especially given some of her mental confusion caused by the stroke. But I really had to keep most of my reservations to myself. First of all- she would just do this all behind my back anyway and Second- this was the first thing that made her happy since the stroke. Third- as a caregiver- you MUST pick your battles which I learned a while ago the hard way.
I went one day to watch her at one of her lessons; I met her instructor and checked out the car. I was surprised as I saw her drive off, that I had tears on my eyes, and I felt pride, not fear. I never imagined what it would feel like to see my mom drive again!
Well the day finally came, after two months of driving lessons, she passed the test! So there it is- an approval from the DMV. So I contacted a local company, and had her car completely outfitted to accommodate her. The outfitting process is actually really cool and I am glad that there are companies out there that do that. Just about anything can be done to make a car or van drivable my anyone of any ability. So there we were: the moment of truth. My mom following me in her new car 20 miles back to her house. Aside from the fact that I could barely breath and she was seriously driving 20 miles per hour, everything went well. So now? Well I got her a Jitterbug cellphone, I call her everyday, I try my hardest not panic or be too overbearing 🙂 And she gallivants around doing god knows what, is happy for the first time since her illness, and says I am driving her crazy 🙂
Here are two pics of the outfitted car so she can drive using only her left leg and left arm.
I value the blog article. Keep writing.
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Hiya! Quick question that’s entirely off topic. Do you know
how to make your site mobile friendly? My web site looks weird when browsing from
my iphone. I’m trying to find a template or plugin that might be
able to resolve this problem. If you have any recommendations, please share.
With thanks!
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Lyndon, wow what a story. So sorry you had to endure all that misery.
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After 30 years of being a full time care giver for my wife with MS I sadly give you some results of this hell. Three years ago I attempted suicide due to manic depression. One year later I experienced a massive heart attack and died. I was reciatated and the doctors placed 7 stents in my arteries to open them up. I am not over weight, don’t smoke or drink. The doctors concluded I was under more stress than most of them had ever seen. I explained my situation and they advised I get help immediately. Even though I have 2 grown daughters neither offered much help. I even dye her hair and shave her legs and other personal hygiene along with the full time caregiving.
One year later I experienced 2 more heart attacks and required bypass surgery just has the doctors warned. Two weeks after my surgery I am lifting my her off her scooter to place her in the shower, on the commode and in the bed. Now I am paying for that with permanent nerological damage to my chest. After 2 back surgeries I can barely lift her 200 lbs to put her in bed or on the commode or shower.
So after 30 years of caregiving and destroying my health I was having a hard time taking care of her so I was fired. Yes, she filed for a divorce and she wants everything. I offered all of it hoping to settle this thing out of court. Well I just found out that even though I don’t have a job or nowhere to live she wants me to pay alimony and the mortagage payments. The judge declared me as homeless and refused to order me to pay.
Now my daughters have to take care of her and they hate me for it. So I have lost my family and everything I have for just trying to do the right thing.
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Continuing to think of you Lyndon and wish you some peace. I’m sorry you have had such a burden to bear.
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Handling work and caregiving responsibilities is never easy
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January 20, 2012
MED-Q has been designed to ease the burden of Caregivers. The fact of the matter is more than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. All this is done with out the help of a reliable, affordable way to ensure Medication Compliance.
Caregivers are over worked, underpaid and under appreciated. In a busy world they forget to remind others to take their medication properly. With the Med_Q Pill Box Compliance System forgetting becomes virtually impossible. The “All-in-One” electronic Pillbox Dispenser reminds you with dual alarm technology. You set the alarms for the times you choose and they will remind you with a flashing light on the individual box that needs to be taken, This is MED-Q’s patented LED-Litebox Technology. The unit has an audio alarm as well Why is there a need for MED-Q, the statistics are staggering:
• A wife’s hospitalization increased her husband’s chances of dying within a month by 35%. A husband’s hospitalization boosted his wife’s mortality risk by 44%.
Nicholas D. Christakis, Professor, Health-care Policy, Harvard Medical School, Boston and Suzanne Salamon, M.D., Associate Chief, Geriatric Psychiatry, Beth Israel eaconess Hospital, Boston,New England Journal of Medicine, Feb. 16, 2006
• 20 hours per week is the average number of hours family caregivers spend caring for their loved ones while 13% of family caregivers are providing 40 hours of care a week or more
Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP. November 2009
• 36% of family caregivers care for a parent and 7 out of 10 caregivers are caring for loved ones over 50 years old
AARP. November 2009
• Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).
Study conducted by researchers at Rice University
and data compiled from the Health and Retirement Study
funded by the National Institute of Aging and conducted by the University of Michigan, 1992-2004
• 47% of working caregivers indicate an increase in caregiving expenses has caused them to use up ALL or MOST of their savings.
Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;
National Alliance for Caregiving and Evercare. March 2009
• The average family caregiver for someone 50 years or older spends $5,531 per year on out of pocket care giving expenses in 2007 which was more than 10% of the median income for a family caregiver that year.
Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. AARP
• Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.
Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One.
National Alliance for Caregiving and Evercare. 2006ie
• 20% of employed female caregivers over 50 years old report symptoms of depression.
MetLife Study of Working Caregivers and Employer Health Costs;
MetLife Mature Market Institute. February 2010\
• 40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.
Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective
• More than 1 in 10 (11%) of family caregivers report that
caregiving has caused their physical health to deteriorate.
How Do Family Caregivers Fare? A Closer Look at their Experiences. Center on Aging Society. 2005
• Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as mu 10 years off a family caregiver’s life..
Elissa S as Epel, Dept of Psychiatry, Univ of Calif, SF, et al,
From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49ch
• 66% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence.
Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP. November 2009
MED-Q Pillbox Compliance System has helped people “RESOLVE TO BE HEALTHY” View at MEDQPILLBOX.com or at GETMEDQ.com
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This is good story i am going to share with my family members and relatives discouraged. Thanks for your blog.
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Sara, you support your mother very well as a caregiver and also helping her in considering about driving after massive stroke in the elder age. I appreciate your good job and caregiver professional work for your family member.
Most of time our agency provided professionals to care about massive stroke patients in Canada, but this is a new kind of example of a family caregiver who provide caregiving to her mother very well and professionally.
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There is a great deal of emotional healing that accompanies stroke recovery – we’ve provided a guide to addressing self esteem issues, depression, etc. as well as given advice for emotional caregiving here: http://ht.ly/5mXCg
You can also find more information and advice on our news page: http://www.homewatchcaregivers.com/homewatchnews.aspx
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I was blessed to see such progress in your mother. I cared for my wife for 22 months before she passed away from a malignant brain tumor. There is nothing in the world as rewarding yet, so draining as being a caregiver of a loved one. I wouldn’t trade it for the world.
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My sister and I are investigating ways to take care of my mother located in Portland Oregon. She currently has a cash flow barely above the medicaid proverty criteria and that includes a reverse mortgage. The problem occurs in finding and financing 24 hour in home care. The services are out radiously expensive for someone who only need supervision. Does anyone have any ideas or thoughts?
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Try In-Home Support services in your area to help you find provider(s) to assist with 24 hour care. Depending on her financial ability, she may have a share of cost & they might assist with balance. Or, ask for referrals with friends, your church, family, etc. Look for someone that has cared for a patient at home, or someone to provide companionship. With so many people unemployed, you might be able to make arrangements with someone that has the skills as caregiver and pay them what you can. Good luck!
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I’ve worked for a professional caregiving agency in Toronto, Lots of time i’ve heard about massive stroke and people offers a requirement of professional to handle this caring level… Its really much hard to take care an elderly person in massive stroke condition
Thanks Shara to helping your Mother
Professionals for Elderly Caregiving
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really like this blog it touches my heart.
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Hello! We are very impressed with your blog and are wondering if we could exchange links. If so, we would be delighted. Thanks a lot!
-Mary of Companion Care NM, LLC
http://www.homehealthnm.com
http://www.companioncarenm.com
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A friend of mine sent me an update on her caregiving challenges that took my breath away, not only because of the magnitude of what she’s dealing with on a daily basis but because of the grace, beauty and wisdom contained in her last paragraph. WIth her permission, I am sharing her words so other caregivers can find hope and inspiration in her compassionate approach to dealing with loved ones who can no longer take care of themselves.
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This is an amazing story of recovery. I’m going to share it with a friend who is discouraged. Thanks for your blog.
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Hi, i work for the Family Resource Network in Brick, NJ. We are hosting a National Cargivers Conference on October 26, 2010 in Iselin, NJ. We were wondering if you’d add this to your blog for anyone interested in attending. The website to register is: http://www.nationalcaregiversconference.org
You can also find more specific details regarding the conference such as the time, location, etc. on the website. Thanks so much for spreading the word!
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If you need additional help or resources to support an aging parent and let them maintain their independence please go to http://www.cooperativehomecare.com. It’s a great resource for children of aging, but still independent parents who just need a little extra help sometime.
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You should check out our site at FHLPoductions.com. We provide excellent caregiver training videos.
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Caregiving: Do’s and don’t of being a good caregiver.
In being a caregiver we always want to do our best for the patient.
But sometimes we get so involved in wanting to help solve all there problems that we lose track of what we are really there for.
In this role we wear many hats. We are the patients – helper, cook, driver, friend, companion, help with bathing, medications reminder, and Personal care.
We try and set up consistence for our patient.
This can be challenging when you walk into a very dysfunctional case.
Which a lot of times the case is, and we don’t even know it on tell we have been there for sometime.
And by this time, we may have gotten told how bad the children treat the parent, or how bad the parent treats the children, even through they are grown adults now.
We may be told I don’t want to talk to that child because they have done this or that to me and I just cannot forgive them.
Or we call the Child of the patient and they say the same thing, my parent treated me so bad that I cannot help you out with there problem or there care, your own, your own.
At these times we feel like it is our place to solve these problems or fix them.
And really it is not our place to fix these family problems, or mend there bridges.
We are there only to give good loving, quality care. Not be the enabler to the family in anyway weather it be the patient or the child of the patient.
We can listen but not take it to heart,
This is where we find our self getting sucked dry by one or both sides. And in the end you are going to choose a side.
And that is what we need to not do as a professional caregiver.
Because there are always two sides to a story, you cannot afford to get caught up in this type of case.
And we cannot do quality care if we are trying to fix the family dynamics.
Before you know it you are burned out and wanting to pull your hair out or some one else’s.
And then there is so much stress on the job that it is hard to go to work and face your patient and the family dynamics every day, and if you are doing 24 hour shifts then that is even worse because you cannot get away from it. And this stress will end up making you sick.
When you start thinking that you have to do it all for your patient or you will lose your job.
That is when you need to start thinking if I do everything for them were do’s it leave me?
Holding the bag for all this family’s hurt, and pain?
This only allows the family, and patient, to continue on the way that they have.
And when they are gone, and there is no more job, and money, and you are sick, and burned out, who is there to take care of you?
As a caregiver I have seen this and lived it time and time again.
And there is always that fear of; if I don’t do it they will fire me.
Just remember that when you got that job you were looking for a job there is always jobs out there for good caregivers and you don’t have to stay in a job were it is all on you.
Or the other scenario is you took it all on you thinking that you had to.
When these types of cases happen, there is usually no happy ending everyone walks away feeling hurt and used. And then the blame game comes into effect.
There is a fine line that we walk, but we need to walk it, and remember that we are only there to give care not there for family counseling.
We can listen to the patient but make no comment on the family dynamics that are going on, or have gone on.
By doing it this way, it will be more health for you and the patient.
If your patient or there family member believes in god, ask them if they would like you to pray on it for them or with them?
If they say yes then your prayer could be something like.
God we ask you to bless this family, and help them along there way, so that you may come into there life, and show them what they need at this time to be the loving family that we know they can be, help this family, Owe Lord, In God’s name Amen.
“This places no blame on anyone, and points no fingers.”
What ever you say in your prayer asks for blessing for ALL to heal as a family unit.
I hope and pray that this is a blessing that will help all that read it,
So many times our elders are depressed and that is why they lash out or stay made at there family.
If they had “know one to be mad at” what would they spend there time on?
This is were a good caregiver could find out what all the patient likes to do, and try and get them back in the game of life, and engaged in good productive thoughts and actives.
If that do’s not work.
Then there are a lot of counselors for elders out there that will come to the home and talk to them and try and help them through whatever is bothering them,
No one said getting older was easy. But we can get older with dignity, and grace, that is were we come in as caregivers and try and help our elders to get through this.
Sometimes it is the fear of dieing, and sometimes they have out lived all there family, and friends, and they feel all alone, and they may feel if I let someone else in they will just leave me again.
And sometimes they just don’t feel good, and want to be left alone, if this is the case then do just that. “Do quality care”.
You just never know when things may turn around.
I have seen it time and time again when things have turned out just great for the patient when we truly just listened and watched what was needed for that particular patient.
The other thing is when there is more then one caregiver on the case it is always good that all caregivers work together not against each other. The patient may like that, but it makes a very sick and unhealthy place for all to work in, and in the end even the patient will be effected from all this unhappiness, and we as the professionals need to see that we don’t let this happen in our work place.
Remember that we are there to take care of someone that can no longer care for them self the way that they need to.
You would not let a child run the show nor have all the other children fight each other.
This is just an example of what you should, and should not, do on a job, because when you get 2 or 3 caregivers fighting on a job, it looks like who is the adult here?
And who is capable of making the right decisions for the care of the patient?
This job is not cut out for everyone, it takes a lot of patients and a lot of love in your heart, to no that all you want to do is give love to someone that is in need of care and that you have the ability to offer that care and love to them.
Some times I know that it does not feel like you are getting the love back but you are everyone benefits from one person giving love, and being kind, and caring, and companionate, and in you giving this loving care, to another. You are passing on love to all.
God Bless and May we always remember that we are all children of God and that we are just here to give love.
Thank you
T b
P.S I was asked by someone to write a blog on caregiving, and then asked if I would mind sharing it to help new caregivers in the home health care field so that they don’t have to learn the hard way I hope that this helps.
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How wonderful to read your blog! You are a young mentor for me!! I’m a 46 year old stay-at-home mom and caregiver to both my parents who now live with us. Everyday is full of activity, laughter, tears, frustration and happiness! I’m sure you know all this very well. I just started a blog (just for me…and anyone out there that needs to vent and read how and what others are doing to help themselves live day to day!) Days like yesterday (a very bad, mad and tearful day) it is a breath of fresh air to turn to your blog and read your words! My blessings to you and your mom…..and please continue the great words from your heart, mind and soul.
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I’ve been a caregiver for a few years and I absolutely love it. There really is no better job in my opinion. I do the whole online marketing thing from time to time, but caregiving is something I always go back to!
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Oh, I’m so encouraged by this story. My sister suffered from a stroke, too. She was only 21 when that happened and I’m going to share this story to her. Thank you!
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My husband had a massive stroke 26 years ago today (August 23, 1983) when he was 51 and I was 49. It was a stroke that left him in a coma and then hospitalized for 4 months. He still could not get out of a chair by himself after all that time which lets you imagine how disabled he was. His was also rt. side paralysis and speech deficits. After a year he started to have a problem with seizures, so he had to wait a little longer to drive. He drove well and often for more than 23 years and then decided that he would stop and use transport for handicapped and my role would expand, although I don’t enjoy driving and always say that I drive 6 miles in any direction from my house. I am happy that your mother took control and was able to achieve the independence and freedom that driving gives her. I am 75 now and we don’t really get much family support, but we have each other, a comfortable home, and I still work 4 days a week so that we can keep up home maintenance without sacrifice. My husband was never able to work again because of the aphasia, so I stepped up to the plate and I am still swinging the bat. I have never been on a caregiver web site before, but because of today’s anniversary, I felt drawn to the computer for this little conversation. For more than a third of my life I have been a caregiver without many breaks for respite. Work is my respite, I guess. Good luk to all who find themselves in the position of being a young caregiver – it’s not easy, but you do what you have to do.
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I spent a lot of time watching my mother take care of my father after his strokes. I think it was one of the things that shaped our family and my character.
Hearing about your situation brings me back to that time.
I later was given the privilege of helping my mother after she was hit by lung cancer. I was able to give my mother back some of the care she had given me.
It was really hard work and we lost our home trying to keep her out of a nursing home as long as possible. But it fed my soul in a way that few other experiences ever have.
My son saw me care for his grandmother when we spent time together on the weekends. (His mother and I were divorced.)
He’s all grown up now and has made me a grandfather. I think that I can see some of the ways that his character was shaped by helping me care for his grandmother. He has is a level of compassion and empathy for others that not everyone has.
Bless you and your mom. Glad to see her on the road again!
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What great news for your mom. hang in there, though!
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Bum Bum Jitterbug! Jitterbug! Jitterbuuuuuuuuuuug!
I know you all love the commercial (here’s the link in case you haven’t seen it: http://www.youtube.com/watch?v=TNdw4CfbwQg), and golly does that phone do the trick! I’m a longtime reader, third time commenter, and I have got to say that the Jitterbug brand cell phone is just the tops! Believe it or not, after Swifty (my companion canine) passed away following a protracted illness, I acquired a capuchin companion monkey from a now defunct carnival near my house. Sprinkles is a real gas, and I’ve taught him to use the Jitterbug to order me pizza from a local trattoria! It was difficult at first- believe me there were a few accidental calls to the fire department that resulted in a few angry visits from the fire marshall- but eventually I read the manual and figured out how to overwrite the presets. I programmed the CORRECT number into all three of the big ‘shortcut’ buttons, and when he calls, they know that it’s Big Reg, and that I’m looking for a Godfather Special with no onions!
I’m happy to hear that your caretaker is doing better, and your modified car gives me some ideas about other things I might modify to make the house more accessible to Sprinkles. No, in case you’re thinking it, I’m not going to let the little bugger drive- he can barely operate the Jitterbug, and that thing is easier to use than an unpeeled banana! I’m thinking more along the lines of a modified blender- maybe with just one big button for him to push (for when he makes my breakfast shakes)- a modified television- with an LCD screen that isn’t so susceptible to falling off the wall when he climbs on it- and maybe even a lever system for the refrigerator, so Sprinkles can get his own damn beers!
I don’t know if you’ve considered it, but a companion primate is a wonderful addition to any home, especially if your mother is just getting back on her feet. I know Sprinkles has really helped lift my spirits with his funny antics, and because he has the mental powers of a primate, he’s better to have conversations with than Swifty was- god rest his soul. Keep up the good work, Sprinkles and I are watching.
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Hi there Sara. I know it has been awhile since you posted so I sincerely hope you see this. What you have done for your mom is truly amazing. I am currently the caregiver for my husband. I have been told by many home support workers and others that I am a saint (which of course..I am not). They confirm for me on a daily basis that if I had allowed the hospital to transfer him to a long-term care faucility that, he would not likely be here today or at the very least would have no quality of life or mental capacity left.
It is my honest opinion, that your strength and willingnes to take on the responsibilty of your mother, is the only reason that she was able to recover as well as she did. How sad it would have been to see such a strong, determined individual such as her, waste away some place for the rest of her natural life. While you may have had to redefine your relationship, you still have your mother. I am quite sure that would not be the case otherwise.
You are truly an inspiration to all of us and your blog has been a wonderful reminder as to why I do what I do. Kudos to you. Good things are certainly in the cards for you. May God bless you and keep both of you safe.
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