Stroke Education for Caregivers – Caregivers Need Help Too

My father has become a full time caregiver since my mother had a serious stroke about 7 years ago. He has beenBook tornado diligent about leaning how to take care of my mother through this time but there were many days he didn’t know who to turn to or what sources to read. I have spent some time with my dad lately to find out what worked for him and my mother and most of the information in this article comes from his practical experience. This is His stroke education for caregivers.

This is advice from someone in the trenches who has found a way to keep both he and his wife healthy, out of the hospital and has kept my mom out of a nursing home.

The Night of My Mother’s Massive Stroke

I remember getting that call late at night from my sister. She lives near my parents so my Dad had called for her help right after calling 911. My sister told me that my mother was being rushed to the hospital and they thought it may be another stroke.

Hospital HallwayMy mother’s first several strokes, decades ago, were considered light strokes which she was able to recover from. This stroke was different.

I made the 4-hour drive in record time and I remember walking into my mother’s room and seeing her within 6 hours of the initial stroke. I remember talking with her and hearing the nurse talking about how they were going to run several more tests and keep her there “to keep an eye on her.”

My mother’s speech was fine at that time and then a second stroke hit her again right there while I was standing in the hallway right outside her door. I believe that is the point were my Dad’s long journey into the caregiver world really began.

One and a Half Months in Rehab

What I am about to write is not meant to be critical of the medical staff that treated my mother after this stroke. This is just my father’s recollection of what happened and how things transpired as he struggled to learn how to care for my mother.

My mother stayed at the hospital’s heart unit for about one week and then was transferred to a long term rehabilitation center connected to the hospital were she spent the next month and a half.

Times were tough for my dad at the hospital but I don’t think everything really settled in until he started seeing her recovery process at the rehabilitation center. He was able to stay with her there much of the time and had access to all the medical staff and physical therapist as he started to learn the real extent of what the massive stroke had done to my mother.

Rehabilitation
This first month was spent watching the rehabilitation staff work with my mother to discover what speech issues they were dealing with, the mental impacts of the stroke and to fully understand how quickly she was recovering and to what extent she may not recover.

This was a stressful time for my Dad but one of hope for a speedy recovery. My Mother and Father had always spent a lot of time in prayer and this remained the same for them there in the rehabilitation center.

My Dad asked a lot of questions and had a lot of information sent his way even though he may not have remembered it all. We always said my Dad was “hard of hearing” but he really was doing his best to understand this.

The month and a half was about up and the insurance company told the hospital that they were not paying for any more of the rehabilitation and that she wasn’t showing enough improvement. I remember my Dad being pretty upset at this as my mother really needed some additional specialized treatment from the rehabilitation staff. Well, this is a subject for another time and not one to get mad about once again.

It was just amazing to hear the doctor say that the insurance company was dictating how long she could stay even though it was the staff’s recommendation that she needed to stay longer. Maybe I should get off this subject.

My Dad’s First Month As a Caregiver

Maybe I should get to the point of this article. This is about my Dad’s journey to becoming a great caregiver for my mother and really stepping up to the plate and becoming the loving husband he was always meant to be. I must add here that my Dad’s love for my Mother and his dedication to her has surprised everyone in the family. My parents have been married for over 50 years and have always loved each other but this stroke put everything in a completely different perspective.

He learned about being a caregiver through “hard knocks.” He said he really didn’t learn that much from the doctor’s but he did agree that every stroke is different so he wasn’t blaming them. Most of his caregiver knowledge came from the rehabilitation center and through learning at home.Caregiver

He learned really quickly that stroke patients need a lot of fluids. My mom passed out at one point and my dad learned from the paramedics that she needed twice as much water as he had been giving her.

Another time the nurse noticed my Mom’s eyes looking “glassy” and recommend that my Dad get her medication adjusted.

A lot of my Dad’s caregiver education came from their continued long term rehabilitation at the Myers Center there in Springfield, Missouri. The staff has been a huge help to both of my parents. This is also the location were my dad was able to attend caregiver classes, for free, and learned a lot from other people who were going through the same things he was dealing with.

My Dad told me he wouldn’t wish what he had to go through as a caregiver on his worst enemy. No one can even come close to understanding what a caregiver goes through unless you have been in their shoes. My Dad told me that about 90% to 95% of the caregivers he knows have left their partner and put them in a nursing home. This isn’t a comment to disrespect caregivers, it’s more of a reality check on how hard it is to take care of someone full time. This has been challenging for my Dad to work with my Mother, now turn the tables and ask yourself if my Mother could even physically take care of my Dad if she was the caregiver.

My Dad spent a lot of time reading magazines, talking to other caregivers, and the rehabilitation staff. He had signed up for several mail order supplements and programs to help stroke victims, many of which he returned and got his money back. He finally found a few sources He and my Mother really love and trust.

One doctor that he swears by (and I assure you that my Dad doesn’t swear) is the Health Alert by Docter Bruce West. This is one of the doctor’s that puts the emphasis on health and supplements and wants to get people off their medication.

Dr. Bruce West
One thing he has learned from Dr. West is that Cod Liver Oil is important to helping with high blood pressure. They are taking several supplements to help with their blood pressure but one thing my Dad is always warning me about now is to not buy the “junk” in the stores. “You need to find companies that make the really healthy stuff.” That’s about as “medical” as you will hear my Dad get.

Through this time he as seen the need to be aware of how their prescribed medication is affecting them. He has had to ask doctor’s several times to change the medication, due to negative side effects. A nurse once “whispered” to him while at his home, when out of earshot of another medical staff member, that they need to do their best to get off the medicine and never be on more than three medications at one time.

I will be writing more on caregiver resource in the near future but suffice it to say here is that all caregivers need to research for themselves what is needed for the one they are giving care to because every situation is different. My Dad just want’s to warn people that “the medication is killing you” and that he thinks that many of the elderly deaths are caused by the medication and not just old age or accidents. He believes that the causes of deaths are attributed to other things when many times the death is due to things like kidney failure which can be traced back to the medication.

Once again, please remember that this is not a professional’s opinion, only the opinion of one caregiver who has been living this “challenging life” for more than 7 years now.

7 Years Later – How Has My Dad Made It Work?

One thing my Dad was emphatic about is that you need to find a doctor who will “really” work with you and try to help get Medicationyou off medication. My Dad said that “the medication was killing us.” That’s a strong statement but this comes from someone who has done all he can to improve both of their health and has a desire to live a long and healthy life free of medication.

My Dad started to sum up the long road to recovery and improving their health. He said “when it finally got to Life and Death, they realized they had to make a change.” He told me, “don’t wait until it’s too late. You need to make the changes now so you don’t find yourself in our situation.”

My Dad also added in a parting shot to me that “sodas are dynamite to your health.” That was not meant to be positive.

I would like to give you a link to a great resource on AARP. They have a quick summary of websites and phone numbers that caregivers and family members may find helpful.

RESOURCES CAREGIVERS SHOULD KNOW ABOUT

My Final Thoughts for You and Your Family

Caregivers may have the most difficult job in the world. They do not get enough credit for all the things they have to do and no one really understands what they are going through.

My personal recommendation is that we all should do more to help take care of our families and help relieve those who are the primary caregivers. They need a break and some kind of vacation. It may not be much but even the smallest things can help.

I will leave you with this last thought.

My Dad can’t get away from my mother for more than about 2 hours but what we have done is for me to find time to come and visit them and wake up really early to head over to a restaurant together for breakfast. This is just a nice quiet time for my Dad to relax, drink some coffee, and just enjoy some quiet time were all he has to do is relax and enjoy is breakfast. This may not seem like much to most of us, but this is something he really looks forward to.

Breakfast
Oh, and we always take some strawberry crepes back to my mother so she can also enjoy a wonderful breakfast.

16 Comments on “Stroke Education for Caregivers – Caregivers Need Help Too”

  1. Hi Rick, first off, I am sorry to hear about your mom’s stroke. My grandmother has had two strokes so far. The first one was the biggest one and at the time my mom and I were her primary caregivers after she came out of the hospital. I can commiserate with everything your dad went through. There was a lot of back and forth with the insurance company and the rehabilitation center as they did not want to continue to pay for her therapy even though she clearly needed it.

    We ended up all pitching in together (my four aunts, mother and my sisters) and paying for a private therapist to come to the house three times a week. As you can imagine, this got expensive very quickly and we had to reduce it to twice per week. I agree with your advice to share the responsibility so that the primary caretaker can take a break and the burden is divided. But what happens to those who may not have a large family like I do? Or cannot afford any extra care or medication?

    I want to share my tips (based on trial and error) for anyone else who is dealing with a loved one experiencing a debilitating stroke. Swallowing food was a challenge for her so we would give her small meals throughout the day instead of the three major meals we usually eat. Moist foods were also easier to feed her such as healthy casseroles and made sure she drank eight cups of liquid each day to prevent the dehydration your dad experienced. Finally, always have something for everyone to look forward to, whether it’s a meal like what your family has or in my case, listening to my grandmother’s favorite CD in the evenings. I really enjoyed reading this, thank you!

    1. Thank you for the wonderful comments.

      First, our family does not have a lot of money either and we are limited on how many people can pitch in. Every family is different but my Dad found over time that he was less stressed out when he took complete control of the care giving. He initially used some free services that had someone come in each day to help with some basic clean up and would be with my mother for several hours for my dad to run errands or go for a walk. No one ever does as good of a job as you can do, so my Dad eventually discontinued this daily service and He and my Mother seem to be happier and less stressed now. I know this may go against what most of us would consider but it works for them.

      I absolutely agree that having something to look forward to, plan for, and have hope in is absolutely necessary when dealing with something like this. Without hope, it’s hard to be positive and even want to live in the future that is ahead.

      Thank you again for some wonderful advice and tips.

  2. I had someone in my family suffer a stroke and it’s its very unsettling watching them struggle and get back to life normally. I appreciate your article and all of the advice you gave in a well written and thoughtful manner.

    Respectfully,
    Robert

    1. Your welcome. I am grateful that I was able to fully recover from my light stroke and grateful for loving parents who have shown many around them about how to make it through a tough time in their live. Thank you for you comment.

  3. I know all too well the devastating effects that stroke can cause on the patient and the stress that it puts on their caregivers. My father had a major heart attack at age 51 (with three kids in college including me) and while he was in the ICU he had a massive stroke. The doctors told my mom that it was the worst stroke they’d ever seen in terms of brain damage and that they were amazed that he survived it. He lived with aphasia for many years, a condition that made it impossibly to speak a single sentence and often impossible to even find a single word which made it tough for him, especially since he was a lawyer. We learned unique ways to deal with that which mostly involved guessing games which he’d excitedly nod to if we figured out what he wanted to say. Obviously he never went back to work but my mother cared for him for 27 years, taking him to physical and vocational rehab for many of those years until he eventually passed away.

    Good luck to your dad and I’m glad to hear he’s someone of faith because that’s crucial.

    1. Thank you for your story and I’m sorry that happened to your Dad and your family. It is incredible to watch the family pull together in difficult times and it can be fun figuring out ways to communicate. It’s also surprising how good we all get at understanding any communication, no matter how it comes out.

      I can see my parent’s faith shining through this situation and I honestly believe it is the primary reason they have found hope and joy in this difficult time. I am always careful to not destroy any hope they have and I also look for ways to help the think about fun future plans we may enjoy together as a family.

      Thank you again.

  4. It makes me realize NOW how hard it was for my brother to take care of our mother when she had Parkinson’s Disease. My brother had power of attorney and he took care of the bills, the doctor visits, the medications and a lot of other stuff… even after she died 3 and a half years ago.
    Thanks for sharing that.

    1. My Dad keeps telling me how no one understands what he’s going through. That is why I defend him to my family when he wants everything just right and how he doesn’t like to change their schedule. I have come to realize that this is one of the mechanisms my dad uses to cope with the situation. I know there are times when my Mom wants to do things that my Dad won’t agree with but if they have both found a way to compromise and make life work for them than who am I to interfere. Desperate times require special circumstances for each individual situation.

  5. Oh dear. I’m so sorry to hear that this befell on your mother.

    It’s more terrifying to hear that medication can actually ‘kill’. I used to have this thought when my grandma was on heavy medication due to having issues such as diabetes, high blood pressure, and many others, I was too young to remember the details. She had to eat over 20 pills a day, and even though I wasn’t knowledgeable enough in the medical field, I felt that something was wrong. I asked my mother whether it is okay to eat so many pills a day, and my mother replied that if the doctor says it’s fine and it’s good for the patient’s (in this case, my grandma) health, then it must be right. She started heavy medication when I was two or so, and passed on when I was five.

    Hugs for you, Rick. All the best to your family, and I hope the future will be better for you!

    1. Thank you for taking the time to share your thoughts.

      As I stated in the article, this is my Dad’s thoughts and opinions but I don’t buy everything many doctor’s are saying all the time. I see my share of doctor’s when necessary and I appreciate what they do for us but no one should blindly follow a doctor’s orders. Sometimes you need a second or third opinion and sometimes you need to flat out question what the doctor is telling you to do.

      Our health is ultimately our own responsibility and we should never find ourselves saying “well, they told me to do it.” 

      Thank you again for stopping by and commenting.

      Disclaimer – This is mine and my Dad’s opinion and is for informational purposes only.

  6. Wow, thanks for posting such a touching and informative article. I’ve been through of some of my own health problems and know first hand the dangers of simply taking the doctors advice and not doing any checking of your own. I was taking medication for years that was exacerbating problems in other areas. These days I’m much better, thanks to doing my own research. I’m really pleased that your Dad and you have been able to empower yourselves somewhat with new information regarding drugs and supplements and have been able to find a doctor that will work to get the patients off medication…that really is unique in this day and age. I wish you all the best for the future.

  7. This is a very touching story of your father taking care of mother after she suffered from stroke. It’s not an easy thing to do, I admire your father for such action. I am very glad that your mother is doing well. Your story just reminded father being on tons of medications and everyday I see him getting worse. I am very grateful that there are natural solutions out there and people dedicating websites to bring quality content to help others live better an healthier lives. Great story, and keep up with the great work.

    1. The funny thing is, I would never thought my father would have been a great caregiver. Growing up, my father always wanted to be my himself. He said hurtful things at times, not really understanding how his words were hurting others. I couldn’t imagine him giving up his freedom to be stuck inside of a condo day after day after day. You have to understand that we grew up on the west coast in Oregon and Washington, and we lived for getting away to the mountains to camp, fish, hike and hunt.

      I know my dad desires to get in the truck and just head off into the sunset. I am so proud of him and how he has become the husband my mother really needs now.

  8. Rick, I really admire you and your family. This is a great story. One that I can relate to oh so well!
    I’m a live in caretaker for my mother. It’s a 24/7 job just as you mentioned. It’s nice to here that you recognize your father’s need for time off.( And yes, even a couple of hours is a blessing!) I hope this article reaches many people in our situations or similar ones. And that they also learn that caretakers need a break. And that they will help to give them one.
    Thanks again.
    Sherri

    1. Thank you Sherri for the kind comments. I just came back from another visit with my parents and they are doing better after a recent medical issue with my dad. It’s good to have them still making things workout together and with their current home. I just pray that they both stay healthy.

      So many things happen when we grow older and my eyes have been opened so much to problems with the elderly or people with health issues. One nice thing is my parents have found a wonderful person to help out with some cleaning and care for my mother to take some load off my dad.

      It would be nice to see more things that could be done for millions of people like them.

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