Looking to talk with someone caring for a non-blood relative

Posted by buckyc71 @buckyc71, Aug 26 7:48am

Good morning,
I’m Becky from Wisconsin. I will be caring for a sibling-in-law after a bone marrow transplant for MDS. I’m finding it to be very different than caring for a blood relative. I’m wondering if there are any non-blood relative caregivers out there who would be willing to have an ongoing conversation about this. Thanks.

Good morning @buckyc71, and a big virtual hug of welcome to Connect. You have landed in the right place. Connect is a pleasant, welcoming community. Our mission is to improve everyone’s quality of life.

We are not medically trained. We do have our own experiences to share. May I introduce you to @becsbuddy, another Becky with a warm heart and lots of creative ideas to help you.

What is your major concern about caregiving to this person?

May you be filled with content and ease.

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Good morning @buckyc71 I'm Scott and while I was the caregiver for my wife for many years I was also a caregiver for my mother-in-law. I'd be happy to discuss my experiences of her caregiving with you.
Strength, courage, and peace!

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@IndianaScott

Good morning @buckyc71 I'm Scott and while I was the caregiver for my wife for many years I was also a caregiver for my mother-in-law. I'd be happy to discuss my experiences of her caregiving with you.
Strength, courage, and peace!

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Scott,
Thanks for reaching out. I would appreciate being able to talk with you and am unsure how to get you my phone number. Thoughts?

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@artscaping

Good morning @buckyc71, and a big virtual hug of welcome to Connect. You have landed in the right place. Connect is a pleasant, welcoming community. Our mission is to improve everyone’s quality of life.

We are not medically trained. We do have our own experiences to share. May I introduce you to @becsbuddy, another Becky with a warm heart and lots of creative ideas to help you.

What is your major concern about caregiving to this person?

May you be filled with content and ease.

Jump to this post

Chris,
Thanks for the warm welcome. I was the caregiver for my daughter when she was diagnosed with lymphoblastic lymphoma when she was not quite 4. Thankfully, the chemo worked and we now have a happy, healthy (and very talkative 2-1/2 year old grandson). My biggest concerns are: (1) communication – being able to define his and my expectations of my role and (2) I will be the sole caregiver during and after his bone marrow transplant. I’m already feeling somewhat overwhelmed and am worried about how that will all work out.

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@buckyc71, Oh my goodness…….what a love bug he must be. I am beginning to get the picture. This young fella will be with you because his parents are working. You will be responsible for your grandson's care while in a hospital stay and afterward. Will you have been part of what we call the "Shared Decision Making" with his clinicians? Is there someone who can sit down with you and help with the daily care issues…..medications, rest, food, recreation, and everything else that makes the happy life of a 2 1/2-year-old. I would want to know what to watch for and how to respond.

I am a little familiar with these chores and duties. My youngest grandson just turned 3 and my youngest granddaughter just turned 1. I have had a great time being part of their early years. In February was the first time I have had both of them with me all day. My daughter-in-law introduced lots of activities to teach me just what is expected. At that time, Amelia became ill and her pediatrician thought it might be COVID-19. They live in Austin. So….it was a bit on the scary side because we knew little about this virus. As it turned out it was an allergy to eggs and some other new foods.

Let's talk about communication……how do you do with that aspect now? What will you need to know? Can you practice somehow? I started with a set of figures from Toy Story. JP would laugh when I got the names wrong (on purpose). He also got to choose his music, and absolutely fell in love with "Baby Shark". His snacks were measured carefully together. We built a teepee for him so he could hide inside.

I don't know how mobile he will be at first. JP and I started a came called HIDE. He would bring his characters into my bed and we would hide them. What fun. Then we would ratchet it down with a storybook and a thumb in the mouth.

Is your grandson using his words well at this age? Can you figure out a routine that he understands and knows how to remind you about it? That is fun because I could tease him about the time or the cookie reward for eating all of his lunch.

Now back to the medical staff. Will you get to practice any bandaging that needs to be done? Does he take pills or liquid medicine easily? What about bathing……do you know the requirements?

I am a great believer that "Knowledge is Power". When you know you just do better.

One more hint for today. Even though everything is yet to be in place, you now have a list of "need to know" items. As my life partner says…..don't get out over your skis. Build one step at a time. I would add practice meditation and mindfulness just for yourself. Stay in the present. Let the knowledge build. I think you will be fine. Please let me know about any questions or issues. I will try to find answers for you.

The first photo shows my attempt at communicating with Amelia. I was waiting for her punch line.
The second photo shows JP enjoying "Baby shark". Guess what, whenever he heard the music he came running.

Be healthy and whole.
Chris

Screen Shot 2020-08-26 at 4

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Sorry to mislead you. My husband’s brother is the one who will be having the bone marrow transplant and I will be his caregiver. He is in his mid-60s.

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@buckyc71

Scott,
Thanks for reaching out. I would appreciate being able to talk with you and am unsure how to get you my phone number. Thoughts?

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Hi @buckyc71 I am more than happy to communicate here on Connect or you can always send me a private message here, but due to a number of family concerns I don't give out my personal contact information. I hope you understand. Scott

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Hi @buckyc71, I'd also like to add my welcome. You'll notice that I modified the title of this discussion that you started to better reflect what you're looking for. I believe you are looking for others who have cared for someone who is not directly a blood relative. Additionally, I'd like to underline the value of sharing in the online community where you can have the benefit of being supported by a group of people with varying perspectives and diverse experiences, not to mention large amounts of compassion and understanding. You can speak openly here. No judgement.

@reibur1951 @becsbuddy @godsgiver @harriethodgson1 have all cared for someone who is not a relative and may have some thoughts to add to this discussion.

I think you might be interested in this related discussion
– No Love Involved Caregiver https://connect.mayoclinic.org/discussion/caregiver-drain/

To connect with others caring for someone going through a bone marrow transplant (BMT), you might like to start with these:
– Long-term caregiving: need a place to vent https://connect.mayoclinic.org/discussion/just-learned-about-this-group/
– Anyone had successful stem cell transplant for AML? https://connect.mayoclinic.org/discussion/anyone-had-successful-stem-cell-transplant-for-aml/

@buckyc71, if you're comfortable sharing, I'd like to know more. Why have you been chosen as the designated caregiver for your husband's brother? Is this a role you are willingly accepting?

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@buckyc71 Hello! I hope I’ll be able to help you through this wonderful, but massive job you are undertaking. Several questions: 1. Will your brother in law be living with you? 2. Do you have a MDPOA, a medical power of attorney? This will be essential! 3. Have you given though to how Covid will affect what you are doing? I’ll add some more questions/info tomorrow. Right now, get a good night’s sleep.

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@becsbuddy

@buckyc71 Hello! I hope I’ll be able to help you through this wonderful, but massive job you are undertaking. Several questions: 1. Will your brother in law be living with you? 2. Do you have a MDPOA, a medical power of attorney? This will be essential! 3. Have you given though to how Covid will affect what you are doing? I’ll add some more questions/info tomorrow. Right now, get a good night’s sleep.

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@becsbuddy Becky in all my research of caring for someone I had not come across Medical Power of Attorney until after my mom's death a few days ago. My eldest brother had Power of Attorney and I thought he had the say in my mom's health care.

I guess since my mom had lived with me and I was the one that took care of her medical care they always asked me about her medical care wishes and end of life decisions. She had the general dnr order, but I was asked many in depth questions of her wishes and my brother with power of attorney did not get asked those questions.

My mom could not verbally answer the questions. She had a brain bleed.. a stroke. Should could not speak nor move her left side at all. She understood all the neurologist said. I communicated with her with hand squeezes.

I really should have had Medical Power of Attorney, but fortunately the doctors worked with me and I did ask my two brothers their input. I made no decisions on my own.. mom was able to do it. I just passed on what she wanted. We had talked about her wishes as other family members and friends went through different situations. Refusal of feeding tubes, life extending measures such as a ventilator.

Now is the time to talk about your wishes with your family or your caregiver, your doctor and to have it written down. My husband and I are going to go through and update some of our documents. Things change over the years. We are trying to make it easier on our children. Even if you are young you need to take care of these legal documents.

Zee Gee

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@buckyc71

Becky, My husband helped me take care of my mom for two years. She passed at the age of 92 1/2 a few days ago.

My husband tells me it was just talking and getting to know each other that helped him most. He learned what he could joke about in those awkward situations that are bound to happen. Like grasping her butt to keep her from falling when getting into the car.

Learn what they like to do. What activities? …. Watch tv or movies? Art? Puzzles? Reading? They will get bored if they cannot do much physcially. If you will be responsible for meals learn what foods they like and don't like. You may have to help him with a special diet. I am not familiar with transplants.. strokes, dementia and type II mobitz was our problems to deal with.

Again it is mostly just getting to know each other. I had not lived with my mom since I was a teen. So I also had to learn her wants and needs too.

Zaee Gee

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@fourof5zs I am so sorry to hear about your mother. It certainly took a lot of courage and strength to get on to Connect and add to the advice! But, you’re right, your mother lived with you so the doctors felt legally safe talking to you Your brother probably had a legal POA and what’s needed to talk about healthcare decisions, is a Medical Durable Power of Attorney. This says that you have discussed everything and are speaking for your mother.
I wish you the best and hope that you will take some time for yourself. Becky

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@fourof5zs

@becsbuddy Becky in all my research of caring for someone I had not come across Medical Power of Attorney until after my mom's death a few days ago. My eldest brother had Power of Attorney and I thought he had the say in my mom's health care.

I guess since my mom had lived with me and I was the one that took care of her medical care they always asked me about her medical care wishes and end of life decisions. She had the general dnr order, but I was asked many in depth questions of her wishes and my brother with power of attorney did not get asked those questions.

My mom could not verbally answer the questions. She had a brain bleed.. a stroke. Should could not speak nor move her left side at all. She understood all the neurologist said. I communicated with her with hand squeezes.

I really should have had Medical Power of Attorney, but fortunately the doctors worked with me and I did ask my two brothers their input. I made no decisions on my own.. mom was able to do it. I just passed on what she wanted. We had talked about her wishes as other family members and friends went through different situations. Refusal of feeding tubes, life extending measures such as a ventilator.

Now is the time to talk about your wishes with your family or your caregiver, your doctor and to have it written down. My husband and I are going to go through and update some of our documents. Things change over the years. We are trying to make it easier on our children. Even if you are young you need to take care of these legal documents.

Zee Gee

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@buckyc71 fourof5zs. Is so correct! The most important thing bout a MDPOA is that you and your BIL talk about everything first! You should know exactly what he wants and speak for him if the situation arises.

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@becsbuddy

@fourof5zs I am so sorry to hear about your mother. It certainly took a lot of courage and strength to get on to Connect and add to the advice! But, you’re right, your mother lived with you so the doctors felt legally safe talking to you Your brother probably had a legal POA and what’s needed to talk about healthcare decisions, is a Medical Durable Power of Attorney. This says that you have discussed everything and are speaking for your mother.
I wish you the best and hope that you will take some time for yourself. Becky

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@becsbuddy
Becky, this site actually helps me. I am still tired and it shows in my typos 😄. My husband and I are putting away the medical equipment and deciding what to do with some of Mama's possessions that are at our home. We are doing a little at a time. Taking time to breath. My mom was his second mom.. as his parents were my second second set of parents. My husband loved mama as much as I did and he has cried with me.

We were allowed to take Mama's dog to the funeral home for a visit. He did not respond to the site of her or her name and has not responded to hearing “Mama” since we visited. He seems to understand that she will not be coming home. Ziggy is a mini poodle and will be 10 years old in a few weeks. .. acts like he is 3. A couple of weeks ago I caught my husband telling Ziggy he loves him. Both are loved by me.

@buckyc71
Becky, I do wish I had more suggestions for the question here, but I don't. Just sitting down and having a good talk is the best thing. You may need to write your questions and answers down. My memory is about shot, so I need notes. I set the alarm on my phone so I would remember when to give Mama her medicines… also to remind me of doctor appointments. On my ipad I could set it to remind me of appointments a day before and hours before.. so double reminding at times. Please keep us updated with his progress and ask any question you wish. I and others will try to answer the best we can.

Zee Gee

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Sweet to hear your story. Inspiring. Thank you

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