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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WOW. She did the dishes! I am so excited for both of you. My hubby is a great dish washer also. A master of all trades. It's sunny today in the Northeast after weeks of dismal rainy days. The light at the end of the tunnel. I love hearing from everyone. Love is a Many Splendid Thing (an old movie and an old song). Oh that reminds me. I watched an amazing, kind of old movie, on Netflix the other day. It's only going to be on until the 22nd. I didn't know that they time limited those movies. But this movie was a gem with the multi-talented Vanessa Redgrave. The name of it is Unfinished Song. I bawled through the whole thing, but it was so delightful, and so poignant. I told all of my friends about it, and everyone called just to thank me for the movie tip. Such a sweet gentle, and at times uproariously funny movie. I can cry at parades however, but this movie could make a rock cry. it was a delight. One of my all time favorites. Even my friends told friends, and everyone loves this movie. I found it by dumb luck. Watch it if you have time.

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@becsbuddy

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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We don't have a wheelchair, but that's an idea. She has a walker with a seat, but hasn't the strength to go farther than 20 or 30 feet. She might go to the park though…

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@lizzier

WOW. She did the dishes! I am so excited for both of you. My hubby is a great dish washer also. A master of all trades. It's sunny today in the Northeast after weeks of dismal rainy days. The light at the end of the tunnel. I love hearing from everyone. Love is a Many Splendid Thing (an old movie and an old song). Oh that reminds me. I watched an amazing, kind of old movie, on Netflix the other day. It's only going to be on until the 22nd. I didn't know that they time limited those movies. But this movie was a gem with the multi-talented Vanessa Redgrave. The name of it is Unfinished Song. I bawled through the whole thing, but it was so delightful, and so poignant. I told all of my friends about it, and everyone called just to thank me for the movie tip. Such a sweet gentle, and at times uproariously funny movie. I can cry at parades however, but this movie could make a rock cry. it was a delight. One of my all time favorites. Even my friends told friends, and everyone loves this movie. I found it by dumb luck. Watch it if you have time.

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Thanks for the feedback and movie suggestion. It sounds good, but we don't have Netflix.

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@sueinmn

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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Yes, all good ideas. Thanks

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@lizzier

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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I am not familiar with PMR and GCA. Thanks for sharing.

My spouse and I have been best friends since age 15 and partners 24 years. She has RA, lymphedema, large kidney stone not removable and metastatic kidney cancer diagnosed last fall after an awful summer of fatigue and feeling crappy, pardon my language. Excruciating sternal pain for 3 months now from mets, but pain is being controlled by palliative care. PT might be strengthening her legs, as she can now usually get out of chairs herself. She lives in her recliner though and hasn't slept in our bed for 12 weeks. Traveling to see friends is hardly an option because they all have stairs and no recliners, so I'm having a hard time with giving that up. Also, I get tired if loading the walker in and out.

Enough whining for now. Have to get something constructive done before the grandkids come!

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@deek15redpeppers

I am not familiar with PMR and GCA. Thanks for sharing.

My spouse and I have been best friends since age 15 and partners 24 years. She has RA, lymphedema, large kidney stone not removable and metastatic kidney cancer diagnosed last fall after an awful summer of fatigue and feeling crappy, pardon my language. Excruciating sternal pain for 3 months now from mets, but pain is being controlled by palliative care. PT might be strengthening her legs, as she can now usually get out of chairs herself. She lives in her recliner though and hasn't slept in our bed for 12 weeks. Traveling to see friends is hardly an option because they all have stairs and no recliners, so I'm having a hard time with giving that up. Also, I get tired if loading the walker in and out.

Enough whining for now. Have to get something constructive done before the grandkids come!

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I am so sorry you are going through this. I am now caregiver for the second person close to me with cancer. The first one died and then I found out about the second one. I hear you about what you are saying. My heart goes out to you. Being a caregiver is something that happens to so many people and it seems like it is really overlooked and not discussed enough and there is very little practical help to be found

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@deek15redpeppers

I am not familiar with PMR and GCA. Thanks for sharing.

My spouse and I have been best friends since age 15 and partners 24 years. She has RA, lymphedema, large kidney stone not removable and metastatic kidney cancer diagnosed last fall after an awful summer of fatigue and feeling crappy, pardon my language. Excruciating sternal pain for 3 months now from mets, but pain is being controlled by palliative care. PT might be strengthening her legs, as she can now usually get out of chairs herself. She lives in her recliner though and hasn't slept in our bed for 12 weeks. Traveling to see friends is hardly an option because they all have stairs and no recliners, so I'm having a hard time with giving that up. Also, I get tired if loading the walker in and out.

Enough whining for now. Have to get something constructive done before the grandkids come!

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PMR (Polymyalgia Rheumatica) is a muscle disorder that is different for different people. Mostly, for me I noticed it when I could not turn over in bed to get out of bed in the morning, and I had so much swelling in my temple by night time that I had to remove my glasses. That's the GCA or Giant Cell Arteritis part. Many of us who have this end up losing our eye sight. For this diagnosis it's prednisone at high dosages to start, and for a while I was on high doses of prednisone. then learning how to taper off of the prednisone. I've had it for 5 years, and some people can go into remission about the 5th years, but my Rheumy didn't want me to get my hopes up, and said clearly that it doesn't happen for everyone. The goal is to get off of the prednisone, and after 5 years I've gone from as high as 60 mg. to now at 7 1/2 mg. When I first started out my primary care doc was unable to figure it out even after lots of blood work. Eventually they wouldn't even see me because I became a P-I-T-A. I was scared to death. I changed to a lovely doc who then reduced her hours, and I had trouble getting appt. on the day she was there. Then I found a wonderful young brilliant DO who helped me so much, and I got a not so good Rheumy, and then finally the best one in the world. I spent years in my recliner, slept in it, and sat in it daily. Finally I began to give up on some meds, and eventually the brain fog lifted. I still have a messed up body, but now my mental capacity is very clear, and I began to take back my life. I've also had two back surgeries, and I have titanium screws in my back that sort of hold me together. But my mobility is compromised. My husband was a saint and took care of me. Now we're back to taking care of each other. In the springtime we gave up our king sized beds, because at our ages we could conceivably need bed care at some point, so we got adjustable twin beds, (thanks Joe Biden for the stimulus check) and I can now sleep in the next bed to him, but it's better than sleeping in that damned chair. sorry about that, but I came to hate my chair. My sleep pattern was the worst part. I could only sleep about 2 hours a night. My bed raises both at the head and the foot, and last night I slept 6 1/2 hours. Some nights I can get 8 hours, but mostly about 5 1/2. I'm working my way back up. When I began to get rid of some of my meds my brain fog lifted. So now I'm determined to squeeze out every nano second doing something that I love. My hand is pretty arthritic, but I can work around it a bit. My mobility is poor, but I manage to do mostly what I want to do with a clearer head. these Illnesses are not for sissies. 🤪

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@lizzier

PMR (Polymyalgia Rheumatica) is a muscle disorder that is different for different people. Mostly, for me I noticed it when I could not turn over in bed to get out of bed in the morning, and I had so much swelling in my temple by night time that I had to remove my glasses. That's the GCA or Giant Cell Arteritis part. Many of us who have this end up losing our eye sight. For this diagnosis it's prednisone at high dosages to start, and for a while I was on high doses of prednisone. then learning how to taper off of the prednisone. I've had it for 5 years, and some people can go into remission about the 5th years, but my Rheumy didn't want me to get my hopes up, and said clearly that it doesn't happen for everyone. The goal is to get off of the prednisone, and after 5 years I've gone from as high as 60 mg. to now at 7 1/2 mg. When I first started out my primary care doc was unable to figure it out even after lots of blood work. Eventually they wouldn't even see me because I became a P-I-T-A. I was scared to death. I changed to a lovely doc who then reduced her hours, and I had trouble getting appt. on the day she was there. Then I found a wonderful young brilliant DO who helped me so much, and I got a not so good Rheumy, and then finally the best one in the world. I spent years in my recliner, slept in it, and sat in it daily. Finally I began to give up on some meds, and eventually the brain fog lifted. I still have a messed up body, but now my mental capacity is very clear, and I began to take back my life. I've also had two back surgeries, and I have titanium screws in my back that sort of hold me together. But my mobility is compromised. My husband was a saint and took care of me. Now we're back to taking care of each other. In the springtime we gave up our king sized beds, because at our ages we could conceivably need bed care at some point, so we got adjustable twin beds, (thanks Joe Biden for the stimulus check) and I can now sleep in the next bed to him, but it's better than sleeping in that damned chair. sorry about that, but I came to hate my chair. My sleep pattern was the worst part. I could only sleep about 2 hours a night. My bed raises both at the head and the foot, and last night I slept 6 1/2 hours. Some nights I can get 8 hours, but mostly about 5 1/2. I'm working my way back up. When I began to get rid of some of my meds my brain fog lifted. So now I'm determined to squeeze out every nano second doing something that I love. My hand is pretty arthritic, but I can work around it a bit. My mobility is poor, but I manage to do mostly what I want to do with a clearer head. these Illnesses are not for sissies. 🤪

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Thanks for explaining your PMR and GCA. My spouse had temporal arterial biopsies trying to diagnose why her inflammatory markers were so high last summer. It was negative and further scans finally showed the renal tumor.

You have quite a story and I am impressed with your attitude and strength. My spouse has nuts and bolts in her back too. I've been wondering about those adjustable beds….. Her sternal pain seems to be improving a lot this week, but the back pain is chronic for sure.

Thanks for sharing.

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The adjustable bed didn't work immediately.My husband still doesn't use his, but since I was getting one he agreed to try it, and who knows. He might need it in the future. At first I was able to do about 2 hrs. and then back to my chair. Then maybe 3 hrs. but now I sleep pretty consistently at least 5 1/2 hrs. Last night I slept 7 1/2. I used to be a great sleeper at night, but for about 4 1/2 years I was getting by with 2 hrs. and we really need that REM sleep to get rested. I was groggy all of the time. My mental capacity was dreary. Our beds were a bit more than $1,000 each, and I didn't want to take that money from savings only to find out that they didn't help. At first after we got them I felt like it was a mistake, but little by little they began to give me a bit more sleep, until now I feel like it is sufficient. I don't know if they can be rented to test it out, at one of those rental places, but it has made a huge difference in my sleep patterns. And we just got the basic ones. Good luck to your wife.

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Also my husband likes his new bed, he just uses it flat. Recently I've been sleeping 3/4 of the night with it raised, then toward morning I lower mine, and sleep an hour or so flat, but I could never sleep the whole night like that. At least we're in the same room.

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@lizzier

The adjustable bed didn't work immediately.My husband still doesn't use his, but since I was getting one he agreed to try it, and who knows. He might need it in the future. At first I was able to do about 2 hrs. and then back to my chair. Then maybe 3 hrs. but now I sleep pretty consistently at least 5 1/2 hrs. Last night I slept 7 1/2. I used to be a great sleeper at night, but for about 4 1/2 years I was getting by with 2 hrs. and we really need that REM sleep to get rested. I was groggy all of the time. My mental capacity was dreary. Our beds were a bit more than $1,000 each, and I didn't want to take that money from savings only to find out that they didn't help. At first after we got them I felt like it was a mistake, but little by little they began to give me a bit more sleep, until now I feel like it is sufficient. I don't know if they can be rented to test it out, at one of those rental places, but it has made a huge difference in my sleep patterns. And we just got the basic ones. Good luck to your wife.

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Thanks for the feedback on the beds. We are just paying for a walk-in shower, so it may be a while! We also winter in AZ, so have 2 abodes to consider!! ( Hopefully she can travel down there this winter. We need the socializing we get there.)

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@deek15redpeppers

Thanks for the feedback on the beds. We are just paying for a walk-in shower, so it may be a while! We also winter in AZ, so have 2 abodes to consider!! ( Hopefully she can travel down there this winter. We need the socializing we get there.)

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@deek15redpeppers I am getting a walk in shower in the next few weeks. Previous owners had a third bedroom remodeled into a large master bath, with soaking tub. I cannot get into that tub, and can barely get into the original cast iron tub in the other bathroom. We are taking out the fancy fiberglass tub to put in a low threshold shower. I'll wager your spouse will look forward to that better accessibility!
Ginger

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