Depressed caregiver

Posted by deek15redpeppers @deek15redpeppers, Jul 17, 2021

My spouse has metastatic kidney cancer which they don't think will end her life, lots of comorbidities and is disabled. Most recently she has severe sternal pain from a fracture, so is mostly housebound. I can't see a light at the end of the tunnel and am really down. Deek

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@becsbuddy

@deek15redpeppers How are you doing today? Explain to your spouse that palliative care will help you understand what she wants and that you will do what she wants. Does she have have an MDPOA? This is a medical power of attorney and health providers look to it when determining care.
When is your virtual meeting? Do you think your spouse will discuss the MDPOA?

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Yes, she has a MDPOA, but we're not at a stage where that's what is bothering her

We're doing better today. She actually stayed awake to write some notes to friends and DID THE DISHES while I mowed!
Our virtual meeting is Thursday, but her grandsons are coming tomorrow. so that will make her day good.

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@deek15redpeppers

Thank you, thank you. You said so many helpful things. What you said about 2 people being in different places makes a lot if sense. My spouse is more accepting of the situation, while I am still struggling with that.

Tonight will be my 5th walk with music or maybe a call to a friend. I'm coming to realize I haven't used my support people as I could have been. It somehow just felt easier to say we were doing okay…when really I'm not.

I am so glad I joined Mayo Connect. The responses have been amazingly helpful in just a few days.

Thank you so much.

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You are certainly welcome. I'm glad that you reached out and spoke about your struggle. It is so helpful to know that we are not alone in this vast universe. I never even told my grown children when I was at my worst, so believe me I do not know all of the answers. I learned a lot on my journey with PMR and GCA, but I would have been far better off if I was honest from the beginning. I was always "doing OK". I even stayed away from people a lot, and "I knew better, but I didn't do better." This all came to me during the course of this disease. We learn a lot from our experience. You are doing the best that you can. No one can expect more.

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@lizzier

You are certainly welcome. I'm glad that you reached out and spoke about your struggle. It is so helpful to know that we are not alone in this vast universe. I never even told my grown children when I was at my worst, so believe me I do not know all of the answers. I learned a lot on my journey with PMR and GCA, but I would have been far better off if I was honest from the beginning. I was always "doing OK". I even stayed away from people a lot, and "I knew better, but I didn't do better." This all came to me during the course of this disease. We learn a lot from our experience. You are doing the best that you can. No one can expect more.

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Thank you again. Support from people like you is helping a lot. Why did I wait so long to reach out?!

I had my walk tonight with music, then we worked on a puzzle together for a bit. During dinner i got her to talk a little bit and she denies being scared of what the future will bring. She also clarified what she meant when she said I could leave – saying it's not fair to me. I reminded her of her favorite saying "Life isn't fair, get used to it". I would never leave a spouse I love because she is ill and can't do all the things we used to do…and I told her that. Now to just figure out what we can do…

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@deek15redpeppers

Thank you again. Support from people like you is helping a lot. Why did I wait so long to reach out?!

I had my walk tonight with music, then we worked on a puzzle together for a bit. During dinner i got her to talk a little bit and she denies being scared of what the future will bring. She also clarified what she meant when she said I could leave – saying it's not fair to me. I reminded her of her favorite saying "Life isn't fair, get used to it". I would never leave a spouse I love because she is ill and can't do all the things we used to do…and I told her that. Now to just figure out what we can do…

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My Mom and I called them "little adventures." We went from whitewater rafting with the grandkids and climbing the mountain in Mexico to see the Monarchs to short road trips to favorite places to walks in the local conservatory in winter or wheelchair trips to the state fair. By the end of her life it was a trip to her favorite restaurant for a drink and share a meal or appetizer and finally just a short visit with great-grands riding up and down on her hospital bed, a card or dice game, or a musical visit from grandsons in the hospice.

Also many hours of reliving earlier adventures, with or without the photo albums. And we always tried to keep some flowers around, such a soothing place to rest the eyes and mind.

Does all of my rambling give you any ideas?

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@lizzier

You are certainly welcome. I'm glad that you reached out and spoke about your struggle. It is so helpful to know that we are not alone in this vast universe. I never even told my grown children when I was at my worst, so believe me I do not know all of the answers. I learned a lot on my journey with PMR and GCA, but I would have been far better off if I was honest from the beginning. I was always "doing OK". I even stayed away from people a lot, and "I knew better, but I didn't do better." This all came to me during the course of this disease. We learn a lot from our experience. You are doing the best that you can. No one can expect more.

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Gads, the replies are entirely excellent! I am grateful I am able to read them.

I have secondary progressive MS, RA and adrenal insufficiency, all being "treated" currently. I,too, am able to totter around and mostly do a good job on the "house work"…but I am not as strong or fast as I was even a year ago so it seems I am very slow, an entirely correct assumption.

Being a reader I reread books and articles and relook at art work, relisten to music of Europe and the Americas and lots of Buddhist music. Many times I wish I could speak the languages of the Asian countries as I listen to the meaning of their songs and cannot appreciate the subtilities. I was not raised in the USA even though my parents are Caucasians and were born and raised in northern CA.; I do read and write English and was never encouraged to learn Mandarin or Tagalog. I can and do spend time thinking of the feelings the music I don't understand directs me toward. I do not mind if my "room mate" cannot share any of this. Each of us in the end cannot go with anyone to our final destination…they can only share part of the ride. I appreciate that very much.

I think after years of this sort living and thinking there is no one who can share our experience except to share it tangentially. That's o.k. as we can still share movies, our thoughts and things we see.

I hope this look into another person's life with incurable, painful and unrelenting disease is helpful. We must never think our life was or is unappreciated or a failre. It was not and is not.

Nemaste, Bodega

We do truly live in a gorgeous world especially at dawn and sundown. Our family is precious even if they live a thousand plus miles away. . We live and that is precious beyond belief. I pray I die in my sleep.

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@deek15redpeppers

Thank you again. Support from people like you is helping a lot. Why did I wait so long to reach out?!

I had my walk tonight with music, then we worked on a puzzle together for a bit. During dinner i got her to talk a little bit and she denies being scared of what the future will bring. She also clarified what she meant when she said I could leave – saying it's not fair to me. I reminded her of her favorite saying "Life isn't fair, get used to it". I would never leave a spouse I love because she is ill and can't do all the things we used to do…and I told her that. Now to just figure out what we can do…

Jump to this post

That filled my heart to read about your walk with music, you two with heads together doing a puzzle, the small talk at dinner. it brought tears to my eyes. Then to read sueinmn speaking of her Mom made me smile, to see her walking along the long, and then the short trail home with her. That's what my husband and I are doing. We do 'something' every day. We always talk about our day when it's over, and we talk about how grateful we are to have had this opportunity to live a long life together. This is a second marriage for each of us, and the first time around wasn't so wonderful, but he has a son, and I have two sons, and a daughter, and we are spending our 48th year together. We're both very different, and have different interests, but we support each other's interests and developed so many common interests, and we grew enormously in our relationship. I cry a little each day because I know it's coming to an end, but I smile more often than I cry. I wonder how he will do if I don't hang on long enough, as his memory becomes more challenged. He wonders who will bring in the newspaper for me every morning, and bring me my second cup of coffee. But then we plan our day, and do something outrageous, like plant a massive new garden (me using my Rollator and him following behind with his wheelbarrow and shovel). Or he goes to the corner and plays cribbage with his cronies, and I work on a design for a new project. My son had his company put in a fabulous new ramp for me yesterday, and you should see me cruising down that ramp. LOL. Have a wonderful day, because everyday we have to decide…will it be a good one, or a not so good one, and then figure out how to make it a good one with what we are handed. You did good girl! keep up the good work, and that means crying if you need too. It's OK. I am sending my love to you, and to anyone who read my messages.

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@lizzier

That filled my heart to read about your walk with music, you two with heads together doing a puzzle, the small talk at dinner. it brought tears to my eyes. Then to read sueinmn speaking of her Mom made me smile, to see her walking along the long, and then the short trail home with her. That's what my husband and I are doing. We do 'something' every day. We always talk about our day when it's over, and we talk about how grateful we are to have had this opportunity to live a long life together. This is a second marriage for each of us, and the first time around wasn't so wonderful, but he has a son, and I have two sons, and a daughter, and we are spending our 48th year together. We're both very different, and have different interests, but we support each other's interests and developed so many common interests, and we grew enormously in our relationship. I cry a little each day because I know it's coming to an end, but I smile more often than I cry. I wonder how he will do if I don't hang on long enough, as his memory becomes more challenged. He wonders who will bring in the newspaper for me every morning, and bring me my second cup of coffee. But then we plan our day, and do something outrageous, like plant a massive new garden (me using my Rollator and him following behind with his wheelbarrow and shovel). Or he goes to the corner and plays cribbage with his cronies, and I work on a design for a new project. My son had his company put in a fabulous new ramp for me yesterday, and you should see me cruising down that ramp. LOL. Have a wonderful day, because everyday we have to decide…will it be a good one, or a not so good one, and then figure out how to make it a good one with what we are handed. You did good girl! keep up the good work, and that means crying if you need too. It's OK. I am sending my love to you, and to anyone who read my messages.

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Your message is a great way to start my day..thanks! And it reminds me we need to talk to someone about a ramp into the house from the garage. Those 2 steps are hard for her.

Planning a good day sounds like a wonderful idea. Her grandsons are coming today and I get to go to the park with them! You have a good day too.

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@bodega

Gads, the replies are entirely excellent! I am grateful I am able to read them.

I have secondary progressive MS, RA and adrenal insufficiency, all being "treated" currently. I,too, am able to totter around and mostly do a good job on the "house work"…but I am not as strong or fast as I was even a year ago so it seems I am very slow, an entirely correct assumption.

Being a reader I reread books and articles and relook at art work, relisten to music of Europe and the Americas and lots of Buddhist music. Many times I wish I could speak the languages of the Asian countries as I listen to the meaning of their songs and cannot appreciate the subtilities. I was not raised in the USA even though my parents are Caucasians and were born and raised in northern CA.; I do read and write English and was never encouraged to learn Mandarin or Tagalog. I can and do spend time thinking of the feelings the music I don't understand directs me toward. I do not mind if my "room mate" cannot share any of this. Each of us in the end cannot go with anyone to our final destination…they can only share part of the ride. I appreciate that very much.

I think after years of this sort living and thinking there is no one who can share our experience except to share it tangentially. That's o.k. as we can still share movies, our thoughts and things we see.

I hope this look into another person's life with incurable, painful and unrelenting disease is helpful. We must never think our life was or is unappreciated or a failre. It was not and is not.

Nemaste, Bodega

We do truly live in a gorgeous world especially at dawn and sundown. Our family is precious even if they live a thousand plus miles away. . We live and that is precious beyond belief. I pray I die in my sleep.

Jump to this post

I read your message and I loved reading it. I had lunch with my favorite 'gal pal' on Sunday. We've been friends for a very long time. I met her in the same year that I met my husband, so she is 'family'. If she stops by, and we're not here, she might let herself in, and make herself a cup of coffee, and read for a bit, and she'll walk through our gardens and take pictures. We''re more like sisters than friends. There was a tragic death of a small child who was murdered by his mother in our state. I was a past Child Protective Services Worker, and I also an Adult Protective Services Worker. So when anything like this happens it is disturbing to me. I was saying to her that I pretty much figured out life but there are a few lessons still to be pondered, and I said that I haven't got that part yet. I also have studied many Spiritual programs. I was raised Catholic, and I've Studied Unity principles, and Buddhism, and for the last 30 years I've studied A course in Miracles, so that's where I landed philosophically. There is a lot that I know, and much that I surmise, but ultimately for me it doesn't matter if I call 'it' God, or Spirit, or the Universe. Or if we see ourselves in our highest evolved state, as God, or Good. She also has her own practice. So I basically asked her what her understanding is, and she looked at me and said "everyone dies". Pretty simple. It really is a singular journey. Someone once said to me "We come into the world alone, and we leave the world alone." I also see a gorgeous world. My children don't live thousands of miles away, but I raised them to be curious, and to live their lives in a productive manner, and to not be a problem to society, but more importantly to not be a problem to themselves. I see them, talk to them and text them, but I don't have expectations that they call daily to fill me up. We love each other, but I don't put demands on them. My parents are gone, and I still have two sister who live away from me and from each other, so mostly my friends are my family, and books are my friends. As my eye sight fades, nature took over, and I get by, as the song goes 'with a little help from my friends'. Life is magical. I loved reading your comments.

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@deek15redpeppers

Your message is a great way to start my day..thanks! And it reminds me we need to talk to someone about a ramp into the house from the garage. Those 2 steps are hard for her.

Planning a good day sounds like a wonderful idea. Her grandsons are coming today and I get to go to the park with them! You have a good day too.

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Yeah I only had two steps also, but they were scarey. I was talking to my son on email one day, and I just said casually that I was going to call someone to get an estimate on a ramp. it was just a statement. By the end of the day I had many pictures sent to me by him. He had pulled up designs, and said that he would make me a ramp. By the end of the week I had designs sent to me by his engineers, and voila the ramp. His company plans intricate designs for heating, air conditioning and ventilating systems for huge hospitals, and large buildings all over the country. I didn't even know he could build a ramp. I had no idea. So funny. So yesterday a great big truck arrived, with a ramp built for a queen. Me. I was so amused. What a sweet thing from a boy with a single Mom, who went to a local college. After my divorce I had no job, no money, and a high school education. I discovered that I could go to college under the G. I. Bill. So I would cry all the way to my college classes, and rush home to get the kids off of the school bus. They were in elementary school. It was rough. I had a determination that somehow, someway I would get an education, and I became a social worker. I would educate my kids, they all three got a college degrees. So did I. I would do whatever it took to put orange juice, eggs and milk in the fridge, and bread on the table. That was my goal. So here I am an old lady with PMR, GCA, and failing eye site. But I will not give up easy. My husband just came into the room and said he's going outside to move some rocks. He's 85. Hysterically funny. Enjoy the grandkids. I just found you yesterday, so I don't know your back story. Tell me again what your situation is. There are so many messages, that I can't read them all, but I find one that pulls on me. Oh yeah during all of this I met my husband, my life partner.

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@deek15redpeppers

Your message is a great way to start my day..thanks! And it reminds me we need to talk to someone about a ramp into the house from the garage. Those 2 steps are hard for her.

Planning a good day sounds like a wonderful idea. Her grandsons are coming today and I get to go to the park with them! You have a good day too.

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Do you have a wheelchair so your spouse can go to the park, too?

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I love how this discussion has turned from sadness and despair to one of such hope! Each one of you has contributed so much! I feel such pride in the Mayo Connect community and the wonderful members!

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Yeah. that was a thing that I missed. Then I thought about it later. Glad Becky thought of it. Our small town has a 'closet' where you can borrow things like wheel chairs, hospital beds, walkers, etc. I understand they can be expensive, but someone on this site must know where to locate something like that. Also it depends on the conditionsof your spouse, and if she is capable of using a wheel chair. I'm guessing that she could since you said that she can do her own personal care. enjoy the grands.

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