I am so sorry you both have this journey to go through. Cancer is hard.
I have an amazing husband who has had periods of caregivers for me with my cancers and I have been a care giver for my mother and her cancers.
It is hard path to walk down. I commend you for your care. I know at times my husband was especially helpful in encouraging me to keep moving forward. Missing appointments only delays treatment and information. Perhaps you can mention her level of anxiety to her doctors so they can give suggestions or a small medication to help. In the midst of a trauma like this emotions are high and thought processes are less productive for her. All the what "if's " can be overwhelming . She has also list a lot of control in her life and may be trying to hold on to some control someway. Encouraging her to focus on positives in life, things , small things she can still enjoy. Bring in peices that bring her peace, like sunsets, a cup of her favorite tea etc just simple pleasures can be helpful.
Be sure to take care of you as well. Arrange to get out for a walk or a meet up with a friend you can talk to for an hour can do wonders for you. Ask for help with meals when friends and family offer help . They can make ahead, even freeze it and put in throw away containers , so you have nothing to do but heat it up.
Keeping you both in my prayers
Hi, Fellow Caregivers. At 86, I no longer have the oomph to go to a local caregiver group our community provides. I would like to thank all of you for the support this forum gives. It is a big part of my fight against depression, and I no longer feel isolated. Often as I read the post, I realize that although each situation is unique, most of us are dealing with multiple problems in a quirk of fate that seems to think that dementia is not enough of a challenge. -- Our particular set of circumstances is my husband, at age 94, is probably stronger than men 20 years younger, while I have become a human pretzel with artificial knees and two back surgeries. Our joke is that now we are 85% of a whole person. However, along with dementia, he has diminished hearing and sight, an irreversible colostomy, and a slow-growing cancerous tumor that is resting on his bladder. We have run the course of treatments. We have lived with 'when and if' so long that he has been in hospice and we made funeral arrangements, then he was released back to regular medical care. I understand burnout from radiation, chemo, a 5-week hospital stay after surgery, a month in a nursing home, attending to an open abdominal wound at home on my own, falls out of bed, and enough repetitive conversations to fill a comedy-drama series. Personally, there are times I do not get where the patience has come from to persevere. -- After so many hours of feeling sorry for myself, I am now in an almost surreal acceptance phase. I now set aside part of each day for myself. I enjoy writing and drawing (both things I can do at home). I use online shopping services to cut down on trips to the store since I tire out easily. We pay people to do the things we once did ourselves to stay in our home, which is a priority. I use technology to keep my husband involved (YouTube, Spotify, etc.). A song, a dance routine, remembering the 40th anniversary of the Miracle on Ice, a peek into a super Nova, are all reminders, if only for a moment, that we are more than a dementia patient and his caregiver. I'm not sure this post will be helpful to anyone except me, but I hope it is. GloRo
I am caregiver for my wife over six months. She is diagnosed with breast cancer that spread to her spine. Now going through treatment. Besides dealing with care for incontinence , also is challenging dealing daily with her condition and not able to attend appointments sometimes because of her anxiety and strength. Any inputs are appreciated.
@guate I can only imagine how difficult this must be for you. And missing appointments must really be difficult. Have you thought about talking with the doctor about having virtual appointments? Your wife wouldn't have to move anywhere but you’d still have the appointment. Just ask the office where she sees her doctor.
Do you have anyone who helps you? Or a way to get out of the house occasionally? Your health is so important!
Have you found any caregiver support groups in your area?
Let me know if you think the idea of virtual appointments could work!
Hi, Fellow Caregivers. At 86, I no longer have the oomph to go to a local caregiver group our community provides. I would like to thank all of you for the support this forum gives. It is a big part of my fight against depression, and I no longer feel isolated. Often as I read the post, I realize that although each situation is unique, most of us are dealing with multiple problems in a quirk of fate that seems to think that dementia is not enough of a challenge. -- Our particular set of circumstances is my husband, at age 94, is probably stronger than men 20 years younger, while I have become a human pretzel with artificial knees and two back surgeries. Our joke is that now we are 85% of a whole person. However, along with dementia, he has diminished hearing and sight, an irreversible colostomy, and a slow-growing cancerous tumor that is resting on his bladder. We have run the course of treatments. We have lived with 'when and if' so long that he has been in hospice and we made funeral arrangements, then he was released back to regular medical care. I understand burnout from radiation, chemo, a 5-week hospital stay after surgery, a month in a nursing home, attending to an open abdominal wound at home on my own, falls out of bed, and enough repetitive conversations to fill a comedy-drama series. Personally, there are times I do not get where the patience has come from to persevere. -- After so many hours of feeling sorry for myself, I am now in an almost surreal acceptance phase. I now set aside part of each day for myself. I enjoy writing and drawing (both things I can do at home). I use online shopping services to cut down on trips to the store since I tire out easily. We pay people to do the things we once did ourselves to stay in our home, which is a priority. I use technology to keep my husband involved (YouTube, Spotify, etc.). A song, a dance routine, remembering the 40th anniversary of the Miracle on Ice, a peek into a super Nova, are all reminders, if only for a moment, that we are more than a dementia patient and his caregiver. I'm not sure this post will be helpful to anyone except me, but I hope it is. GloRo
@gloro I am so humbled reading your post. You are doing so much for your husband and yourself, but you never come across as someone who will give up or who is depressed.
Do you have a Meals on Wheels program in your area? They deliver hot meals every day at a low cost. I’ve been a volunteer for almost 20 years. The benefit to you will be great.
Can you give them a call on Monday to see what they offer and how they can help you?
When I reach that "point", if I catch kit in time, I attach the kitchen or the floors. Some time if find a reason to go to the grocery store. I love you wife and know she's dealing with a lot more than I am. I just need to take a minute and remind myself of that and remember to give thanks for the over 60 years we've had.
@gloro I am so humbled reading your post. You are doing so much for your husband and yourself, but you never come across as someone who will give up or who is depressed.
Do you have a Meals on Wheels program in your area? They deliver hot meals every day at a low cost. I’ve been a volunteer for almost 20 years. The benefit to you will be great.
Can you give them a call on Monday to see what they offer and how they can help you?
We do get Meals on Wheels. They have been coming so long we know all those lovely people by name. I have always been and luckily continue to be a problem solver. Taking care of small details often proves the gateway to tackling what seems insurmountable. Also, having stumbled into using IT by necessity. makes our lives easier and richer. In a conversation yesterday, while talking to the doctor who has shepherded me through depression, I noted that even though we are 'older than dirt', I do not have to leave the house to earn a living. Who knew that spending all the money used on fun, that now pays for colostomy supplies, incontinent products and medical appointments would turn out to be a positive. If there is one thing my dear boy and I share is a good sense of humor. Even when it wears thin, I am amazed at its resilience. Another thing, I have put into play is sharing our situation with everyone in the family, most of whom live in other states. I have impressed them that having an 86-year-old caregiver for their father has shortcomings. Better to have everyone thinking of a new reality if I falter. I have found avoidance and illusion comes with this situation for those who are not directly involved in the day to day care. Thank you so much for your response. I get a great deal of benefit from this internet forum. When sitting in a room discussing things face to face, I have often been overwhelmed by what others are called upon to handle and exhausted by my desire to give solutions. It would be fine for a younger me, but at my age, it is draining. There is only so much in the tank and my focus is now selfishly myself first and my dear husband secondly. Right now, it is a strategy that gives us both the best life possible. When it changes, hopefully, I can come up with something new. gloro
Hi, Fellow Caregivers. At 86, I no longer have the oomph to go to a local caregiver group our community provides. I would like to thank all of you for the support this forum gives. It is a big part of my fight against depression, and I no longer feel isolated. Often as I read the post, I realize that although each situation is unique, most of us are dealing with multiple problems in a quirk of fate that seems to think that dementia is not enough of a challenge. -- Our particular set of circumstances is my husband, at age 94, is probably stronger than men 20 years younger, while I have become a human pretzel with artificial knees and two back surgeries. Our joke is that now we are 85% of a whole person. However, along with dementia, he has diminished hearing and sight, an irreversible colostomy, and a slow-growing cancerous tumor that is resting on his bladder. We have run the course of treatments. We have lived with 'when and if' so long that he has been in hospice and we made funeral arrangements, then he was released back to regular medical care. I understand burnout from radiation, chemo, a 5-week hospital stay after surgery, a month in a nursing home, attending to an open abdominal wound at home on my own, falls out of bed, and enough repetitive conversations to fill a comedy-drama series. Personally, there are times I do not get where the patience has come from to persevere. -- After so many hours of feeling sorry for myself, I am now in an almost surreal acceptance phase. I now set aside part of each day for myself. I enjoy writing and drawing (both things I can do at home). I use online shopping services to cut down on trips to the store since I tire out easily. We pay people to do the things we once did ourselves to stay in our home, which is a priority. I use technology to keep my husband involved (YouTube, Spotify, etc.). A song, a dance routine, remembering the 40th anniversary of the Miracle on Ice, a peek into a super Nova, are all reminders, if only for a moment, that we are more than a dementia patient and his caregiver. I'm not sure this post will be helpful to anyone except me, but I hope it is. GloRo
This is regarding our 98-year-old Beautiful Mother😇
As far as falling out of bed, we use this rail from Amazon.
“Able Life”
Extend-A-Rail”
The link below shows one that may be even better for your needs: I attached the Amazon link.
“Stander EZ Adjust Bed Rail, Adjustable Senior Bed Rail and Bed Assist Grab Bar for Elderly Adults with Organizer Pouch” https://a.co/d/iCxZTmJ
You will need some help putting it on. You need to lift the mattress to place the straps that secure it.
It’s been a life saver.
When it’s extended to full length, we place her portable toilet at the end to give an extra extension. We have some Christmas bells attached to the portable toilet, so that every time she try’s to get up we can hear it and go help her get out of bed.
We dod the same thing for our mother-in-law. We also turned her mattress over as she had a pillow top with foam that was too soft when she sat up to help her rise. It made her feel like she was falling off the bed etc.
Hi, Fellow Caregivers. At 86, I no longer have the oomph to go to a local caregiver group our community provides. I would like to thank all of you for the support this forum gives. It is a big part of my fight against depression, and I no longer feel isolated. Often as I read the post, I realize that although each situation is unique, most of us are dealing with multiple problems in a quirk of fate that seems to think that dementia is not enough of a challenge. -- Our particular set of circumstances is my husband, at age 94, is probably stronger than men 20 years younger, while I have become a human pretzel with artificial knees and two back surgeries. Our joke is that now we are 85% of a whole person. However, along with dementia, he has diminished hearing and sight, an irreversible colostomy, and a slow-growing cancerous tumor that is resting on his bladder. We have run the course of treatments. We have lived with 'when and if' so long that he has been in hospice and we made funeral arrangements, then he was released back to regular medical care. I understand burnout from radiation, chemo, a 5-week hospital stay after surgery, a month in a nursing home, attending to an open abdominal wound at home on my own, falls out of bed, and enough repetitive conversations to fill a comedy-drama series. Personally, there are times I do not get where the patience has come from to persevere. -- After so many hours of feeling sorry for myself, I am now in an almost surreal acceptance phase. I now set aside part of each day for myself. I enjoy writing and drawing (both things I can do at home). I use online shopping services to cut down on trips to the store since I tire out easily. We pay people to do the things we once did ourselves to stay in our home, which is a priority. I use technology to keep my husband involved (YouTube, Spotify, etc.). A song, a dance routine, remembering the 40th anniversary of the Miracle on Ice, a peek into a super Nova, are all reminders, if only for a moment, that we are more than a dementia patient and his caregiver. I'm not sure this post will be helpful to anyone except me, but I hope it is. GloRo
I am a caregiver for both of my parents age 83 and soon to be 87. These stories are so inspiring. The stories of caregiving and advocacy for one’s self care make me wonder what I can do different.
I wish my mom would accept treatment for her longstanding depression and anxiety. She’s gotten worse since my dad’s become less mobile and more dependent on care. She has medication anxiety and refuses meds for her anxiety/depression. She will take meds for hypertension and vitamins for her deficiencies, but she hates it and constantly complains. It makes things so much more difficult. Sometimes, it seems like she likes being miserable. I wish she could see that people find happiness in all phases of life, despite dire circumstances.
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I am so sorry you both have this journey to go through. Cancer is hard.
I have an amazing husband who has had periods of caregivers for me with my cancers and I have been a care giver for my mother and her cancers.
It is hard path to walk down. I commend you for your care. I know at times my husband was especially helpful in encouraging me to keep moving forward. Missing appointments only delays treatment and information. Perhaps you can mention her level of anxiety to her doctors so they can give suggestions or a small medication to help. In the midst of a trauma like this emotions are high and thought processes are less productive for her. All the what "if's " can be overwhelming . She has also list a lot of control in her life and may be trying to hold on to some control someway. Encouraging her to focus on positives in life, things , small things she can still enjoy. Bring in peices that bring her peace, like sunsets, a cup of her favorite tea etc just simple pleasures can be helpful.
Be sure to take care of you as well. Arrange to get out for a walk or a meet up with a friend you can talk to for an hour can do wonders for you. Ask for help with meals when friends and family offer help . They can make ahead, even freeze it and put in throw away containers , so you have nothing to do but heat it up.
Keeping you both in my prayers
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1 ReactionHi, Fellow Caregivers. At 86, I no longer have the oomph to go to a local caregiver group our community provides. I would like to thank all of you for the support this forum gives. It is a big part of my fight against depression, and I no longer feel isolated. Often as I read the post, I realize that although each situation is unique, most of us are dealing with multiple problems in a quirk of fate that seems to think that dementia is not enough of a challenge. -- Our particular set of circumstances is my husband, at age 94, is probably stronger than men 20 years younger, while I have become a human pretzel with artificial knees and two back surgeries. Our joke is that now we are 85% of a whole person. However, along with dementia, he has diminished hearing and sight, an irreversible colostomy, and a slow-growing cancerous tumor that is resting on his bladder. We have run the course of treatments. We have lived with 'when and if' so long that he has been in hospice and we made funeral arrangements, then he was released back to regular medical care. I understand burnout from radiation, chemo, a 5-week hospital stay after surgery, a month in a nursing home, attending to an open abdominal wound at home on my own, falls out of bed, and enough repetitive conversations to fill a comedy-drama series. Personally, there are times I do not get where the patience has come from to persevere. -- After so many hours of feeling sorry for myself, I am now in an almost surreal acceptance phase. I now set aside part of each day for myself. I enjoy writing and drawing (both things I can do at home). I use online shopping services to cut down on trips to the store since I tire out easily. We pay people to do the things we once did ourselves to stay in our home, which is a priority. I use technology to keep my husband involved (YouTube, Spotify, etc.). A song, a dance routine, remembering the 40th anniversary of the Miracle on Ice, a peek into a super Nova, are all reminders, if only for a moment, that we are more than a dementia patient and his caregiver. I'm not sure this post will be helpful to anyone except me, but I hope it is. GloRo
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12 Reactions@guate I can only imagine how difficult this must be for you. And missing appointments must really be difficult. Have you thought about talking with the doctor about having virtual appointments? Your wife wouldn't have to move anywhere but you’d still have the appointment. Just ask the office where she sees her doctor.
Do you have anyone who helps you? Or a way to get out of the house occasionally? Your health is so important!
Have you found any caregiver support groups in your area?
Let me know if you think the idea of virtual appointments could work!
-
Like -
Helpful -
Hug
1 Reaction@gloro I am so humbled reading your post. You are doing so much for your husband and yourself, but you never come across as someone who will give up or who is depressed.
Do you have a Meals on Wheels program in your area? They deliver hot meals every day at a low cost. I’ve been a volunteer for almost 20 years. The benefit to you will be great.
Can you give them a call on Monday to see what they offer and how they can help you?
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Hug
2 ReactionsThx!
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1 ReactionWe do get Meals on Wheels. They have been coming so long we know all those lovely people by name. I have always been and luckily continue to be a problem solver. Taking care of small details often proves the gateway to tackling what seems insurmountable. Also, having stumbled into using IT by necessity. makes our lives easier and richer. In a conversation yesterday, while talking to the doctor who has shepherded me through depression, I noted that even though we are 'older than dirt', I do not have to leave the house to earn a living. Who knew that spending all the money used on fun, that now pays for colostomy supplies, incontinent products and medical appointments would turn out to be a positive. If there is one thing my dear boy and I share is a good sense of humor. Even when it wears thin, I am amazed at its resilience. Another thing, I have put into play is sharing our situation with everyone in the family, most of whom live in other states. I have impressed them that having an 86-year-old caregiver for their father has shortcomings. Better to have everyone thinking of a new reality if I falter. I have found avoidance and illusion comes with this situation for those who are not directly involved in the day to day care. Thank you so much for your response. I get a great deal of benefit from this internet forum. When sitting in a room discussing things face to face, I have often been overwhelmed by what others are called upon to handle and exhausted by my desire to give solutions. It would be fine for a younger me, but at my age, it is draining. There is only so much in the tank and my focus is now selfishly myself first and my dear husband secondly. Right now, it is a strategy that gives us both the best life possible. When it changes, hopefully, I can come up with something new. gloro
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6 ReactionsThis is regarding our 98-year-old Beautiful Mother😇
As far as falling out of bed, we use this rail from Amazon.
“Able Life”
Extend-A-Rail”
The link below shows one that may be even better for your needs: I attached the Amazon link.
“Stander EZ Adjust Bed Rail, Adjustable Senior Bed Rail and Bed Assist Grab Bar for Elderly Adults with Organizer Pouch”
https://a.co/d/iCxZTmJ
You will need some help putting it on. You need to lift the mattress to place the straps that secure it.
It’s been a life saver.
When it’s extended to full length, we place her portable toilet at the end to give an extra extension. We have some Christmas bells attached to the portable toilet, so that every time she try’s to get up we can hear it and go help her get out of bed.
Please, let me know if this helps anyone.
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Helpful -
Hug
5 ReactionsWe dod the same thing for our mother-in-law. We also turned her mattress over as she had a pillow top with foam that was too soft when she sat up to help her rise. It made her feel like she was falling off the bed etc.
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1 ReactionWhat a wonderful message you have to share! Thank you fir sharing!
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1 ReactionI am a caregiver for both of my parents age 83 and soon to be 87. These stories are so inspiring. The stories of caregiving and advocacy for one’s self care make me wonder what I can do different.
I wish my mom would accept treatment for her longstanding depression and anxiety. She’s gotten worse since my dad’s become less mobile and more dependent on care. She has medication anxiety and refuses meds for her anxiety/depression. She will take meds for hypertension and vitamins for her deficiencies, but she hates it and constantly complains. It makes things so much more difficult. Sometimes, it seems like she likes being miserable. I wish she could see that people find happiness in all phases of life, despite dire circumstances.
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Helpful -
Hug
2 Reactions