Hi Carolyn. This particular diet is always hard for everyone to calculate thoroughly and to stick with. You are giving this heroic attention and your partner is very fortunate that you are such a capable and dedicated person able to support his health and deal with the CKD diet. It does not help either of you that that he has memory issues as well.
When I was a medical social worker case manager I often witnessed challenges in households between patients with a chronic disease that had a medical order for a specialized diet balanced against the patients’ wishes/self perception of quality of life. I have no idea how diminished your partner’s cognition is at this point but I have not heard you mention that he lacks capacity. Now may be a good time to for both of you to have a discussion with your primary care provider about the definition of “quality of life” for your partner IF he has enough capacity to understand that deviating from this CKD diet has the potential for serious medical consequences. Likely a happy medium ground can be found. I can state with certainty from years of experience in my work that as patients experience cognitive decline and their world starts to get smaller, normal everyday things, like treats, take on increasing significance in promoting a feeling of happiness. It is worth a chat with the MDs re how to manage the CKD well enough vs optimally. Sometimes it is also possible to find non edible diversions for some patients that generate a feeling of happiness without or with fewer food treats.
So sorry you and your partner are in this situation together.
Sylvia, thank you for pointing telling me about how in your experience, sweets take on a greater significance as their world narrows. This is good information to know. Helps me keep things in perspective. I am trying to find non-edible diversions, but it is quite challenging, as he seems to want to do less and less these days.
Sadly, as time goes by he will likely do less and less that involves leaving his protected home environment where he will always be able to manage the best he can. The physical world of the majority of folks with memory loss/dementia and chronic health conditions often shrinks significantly with time (other than going to medical appointments). I hope that his friends and even his annoying sister visit him more often as they are also a form of grounding for him and an opportunity for you to get out of the house knowing that he is not at home alone.
I attend a care giver's support group. Many of us are caregivers for partners or parents with dementia but there are other situations as well. Our motto is the same a AA's - Who you see here, what you hear here, when you leave here let it stay here. This allows us the freedom to express our frustrations and have a good old fashioned rant about our situation. None of us are abandoning our care giving roll but we are acknowledging, on a local level, one day a week, that we are human, over burdened, stressed and, when close to breaking, supported by neighbours who often become friends. It is a small hour out of a week but it is our hour. I hope there is a similar group in your area. It has saved me on several occasions and, possibly, my partner too. Being one person living two lives is fucking exhausting!
It is such hard work trying to keep everything healthy and safe for our loved ones. I have decided that Glenn likes his alcohol and that that is okay. He is confined to his wheelchair and has very little left in life since his stroke. I'm not taking that away. It is part of his quality of life.
Specialized renal and kidney health apps track both sodium and phosphorus (phosphate), including KidneyDiet, Kidney Pal, and Cronometer. Standard general diet apps usually omit phosphorus tracking, making renal-specific tools necessary
When my Dad had CKD, he had so many other health issues, including vascular dementia; we didn't do much about his diet. We needed to give him injections to help his anaemia.
Sylvia's comments are helpful.
I wanted to share from my experience - which may not apply to yours - that sometimes doing all these things to help them stay as healthy as possible can be our way of having some control over our own uncertainty, grief and frustrations ....so when things don't happen as they should (note the should-ing expectation) it can be doubly scary a) about our person's health and b) underscore our inability to control outcomes even when we're busting a gut to do things. Both of those can amplify all the hard emotions at our person AND at the situation...but it's all hard and very human.
You can only do what you can do, hon. Only you'll know what that means in terms of 'the doing' each day. I'm hoping the MD/dietician can help.
A rock and a hard place. I'm sorry you are dealing with that, on top of the grinding day to day struggles we all have. I'm thinking of you.
Hi Carolyn. This particular diet is always hard for everyone to calculate thoroughly and to stick with. You are giving this heroic attention and your partner is very fortunate that you are such a capable and dedicated person able to support his health and deal with the CKD diet. It does not help either of you that that he has memory issues as well.
When I was a medical social worker case manager I often witnessed challenges in households between patients with a chronic disease that had a medical order for a specialized diet balanced against the patients’ wishes/self perception of quality of life. I have no idea how diminished your partner’s cognition is at this point but I have not heard you mention that he lacks capacity. Now may be a good time to for both of you to have a discussion with your primary care provider about the definition of “quality of life” for your partner IF he has enough capacity to understand that deviating from this CKD diet has the potential for serious medical consequences. Likely a happy medium ground can be found. I can state with certainty from years of experience in my work that as patients experience cognitive decline and their world starts to get smaller, normal everyday things, like treats, take on increasing significance in promoting a feeling of happiness. It is worth a chat with the MDs re how to manage the CKD well enough vs optimally. Sometimes it is also possible to find non edible diversions for some patients that generate a feeling of happiness without or with fewer food treats.
So sorry you and your partner are in this situation together.
Sylvia, thank you for pointing telling me about how in your experience, sweets take on a greater significance as their world narrows. This is good information to know. Helps me keep things in perspective. I am trying to find non-edible diversions, but it is quite challenging, as he seems to want to do less and less these days.
Sadly, as time goes by he will likely do less and less that involves leaving his protected home environment where he will always be able to manage the best he can. The physical world of the majority of folks with memory loss/dementia and chronic health conditions often shrinks significantly with time (other than going to medical appointments). I hope that his friends and even his annoying sister visit him more often as they are also a form of grounding for him and an opportunity for you to get out of the house knowing that he is not at home alone.
Thank you for your wisdom, Sylvia.
And the same back to you Carolyn. I appreciate all your share.
These are really good points to highlight, Sylvia.
I attend a care giver's support group. Many of us are caregivers for partners or parents with dementia but there are other situations as well. Our motto is the same a AA's - Who you see here, what you hear here, when you leave here let it stay here. This allows us the freedom to express our frustrations and have a good old fashioned rant about our situation. None of us are abandoning our care giving roll but we are acknowledging, on a local level, one day a week, that we are human, over burdened, stressed and, when close to breaking, supported by neighbours who often become friends. It is a small hour out of a week but it is our hour. I hope there is a similar group in your area. It has saved me on several occasions and, possibly, my partner too. Being one person living two lives is fucking exhausting!
Yes. I have a caregiver support group that I attend on Tuesdays.
It is such hard work trying to keep everything healthy and safe for our loved ones. I have decided that Glenn likes his alcohol and that that is okay. He is confined to his wheelchair and has very little left in life since his stroke. I'm not taking that away. It is part of his quality of life.
Specialized renal and kidney health apps track both sodium and phosphorus (phosphate), including KidneyDiet, Kidney Pal, and Cronometer. Standard general diet apps usually omit phosphorus tracking, making renal-specific tools necessary
Sounds really stressful. Sometimes the best advice comes from those actually living with the condition- suppport group ?
Yes, support helps, but you still have to look up food values and log them. There is no workaround this.
Yes indeed support does not releave responsibility. It can however offer tips, tricks and tools others have found useful traveling on a similar path.
Hugs, Carolyn. I feel your frustration.
When my Dad had CKD, he had so many other health issues, including vascular dementia; we didn't do much about his diet. We needed to give him injections to help his anaemia.
Sylvia's comments are helpful.
I wanted to share from my experience - which may not apply to yours - that sometimes doing all these things to help them stay as healthy as possible can be our way of having some control over our own uncertainty, grief and frustrations ....so when things don't happen as they should (note the should-ing expectation) it can be doubly scary a) about our person's health and b) underscore our inability to control outcomes even when we're busting a gut to do things. Both of those can amplify all the hard emotions at our person AND at the situation...but it's all hard and very human.
You can only do what you can do, hon. Only you'll know what that means in terms of 'the doing' each day. I'm hoping the MD/dietician can help.
I'm sorry things are so tough and frustrating. xo