I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: tsengyu1943 on June 10, 2014, 08:07:47 AM
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Hi All,
I'm a caregiver to my future mother in law, and we are getting married in September. We are looking for some solution for her since she's completely blind and cannot do manual exchanges or run the cycler on herself. We will be going away for two weeks on honey moon and I'm looking all over for a facility that we can place her that can give her dialysis. All of the respite stay I have asked cannot do that in their facility, we can only do in center hemo, which require her to get a temp fistula. We don't want to put her thru hemo and make the situation even more complicated. Is there anyone out there can give me some light what else I can do? We do not have friends and relatives that can help her out on that..
PK
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Does she live with you ? You could try to hire someone to stay with her during that time, and teach them how to do the cycler. Sometimes a Home Health Agency will help out, and they usually send a nurse a couple of times a week as well , or more often if needed. Who tends to her when you are out shopping , etc ?? It has to be really stressful to be her only source of care. What if you had to be hospitalized, or were unable to do it for anouther reason ?? It really sounds like you need a backup plan anyway, even if you were not going on your honeymoon. Hope you find some answers .
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Hi All,
I'm a caregiver to my future mother in law, and we are getting married in September. We are looking for some solution for her since she's completely blind and cannot do manual exchanges or run the cycler on herself. We will be going away for two weeks on honey moon and I'm looking all over for a facility that we can place her that can give her dialysis. All of the respite stay I have asked cannot do that in their facility, we can only do in center hemo, which require her to get a temp fistula. We don't want to put her thru hemo and make the situation even more complicated. Is there anyone out there can give me some light what else I can do? We do not have friends and relatives that can help her out on that..
PK
Perhaps this crisis is an oportunity to consider hemo. Eventaully it will probably happen anyway and you may be trying to do too much to do PD at home for a blind person. It really puts a lot of strain on your life.
PD is really meant for people who can do for themselves. Doing all the exchanges 7 days per week is too much for a second person to do often.
If she went onto permanent hemo it would take off a lot of stress. She would just need a ride to the clinic 3 days per week. Then on your vacation it would be smoother.
I admire what you are trying to do but this may not be the best way to manage her kidney disease.
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Did you ask for suggestions at her dialysis center? Maybe one of the nurses there would even be interested in making some extra money and come to help. Or maybe the social worker there will have ideas. I know social workers have a bad reputation, but everyone I worked with at my particular center was very helpful.
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Thank you obsidianom, nursey66 and noahvale. It's frustrating to find backup in our situation. First place I spoke to was our dialysis center, I spoke to our nurse, social worker and dr during the monthly meeting. They did give me some directions but still....first they suggest for arrange her to go to the nearest in center for Hemo 3 times a week, but that require my mil to get a temp fistula for hemo, and my fiance is strongly against it. My future mil is blind and doesn't speak a word of english, she's pretty healthy,able to walk around the house by herself and cook something simple when I'm out getting groceries or running errands. She is also doing great on nightly PD on cycler, I just need to help set the machine up during the day and my fiance plug her in at night and unplug her in the morning, so far this way work fine for us. We are starting to think for a long term solution since we can't always be there for her after the wedding. And obsidianom you are right, it's draining after a period of time if we can't take a break in between. We are starting to think if we made a wrong choice to have her on PD earlier this yr, considering her age (71) and her life style, we thought it's the best that she can stay home on cycler at night while she sleep instead of spending 3 days a week in the center while she got no one to talk to and unable to understand others. But it does take a toll on us, we are pretty much tight down...at least me. haha... but it might not work well once I go back to work after September tho..
I have spoke to our nurse and worse case scenario, they are willing to help by put her on the cycler if I can arrange someone to get her in center on weekdays, which is a great relief to hear if I can't find any other solution. I have found someone that might be able to help this time, but still waiting for them to confirm with me to see if the plan we talk about works or not, still...this is just a temp cover up. I need to explore further for a better long term solution. Thanx for the reach out!! I really appreciated.
PK
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Why don't you contact an organization like BrightStar Care (http://www.brightstarcare.com) which has locations around the nation. My family has been looking into them to provide supplementary care for one of our parents. They work on an hourly on-call (as needed) basis and bill weekly for their services. They have a wide range of skilled nurses who will handle almost any care request. Not only might this be a solution for now, but in the future too when you need a break from caring for your mother-in-law. You could also inquire if they have any staff who speaks the same language as your MIL.
Good luck!
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Why don't you contact an organization like BrightStar Care (http://www.brightstarcare.com) which has locations around the nation. My family has been looking into them to provide supplementary care for one of our parents. They work on an hourly on-call (as needed) basis and bill weekly for their services. They have a wide range of skilled nurses who will handle almost any care request. Not only might this be a solution for now, but in the future too when you need a break from caring for your mother-in-law. You could also inquire if they have any staff who speaks the same language as your MIL.
Good luck!
Hi Tío Riñon,
I have called couple of the services similar to that, due to our location, it's hard to find people that speaks our language, I'm sure if we live in CA, there would be plenty.... another thing I worry about using those service is that my mil is blind, I'm not sure how trust worthy those people are to let them in the house with a blind person that can't communicate with her. But thanx for the info, let me give them a call and see, maybe they might have someone that speaks mandarin. =) Great tip!
PK
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I dont envy your position. Sorry to hear this all. I know how much work it is to care for a dialysis patient .
I didnt realize she didnt speak English. That really adds to the problem.
I would suggest a fistula if she can tolerate it medically. Then in the future you have more options if PD doesnt work out or last. It would give you options at least in emergencies so if you need to go away she can go in center for a week or 2 easily. Having a fistula ready and workable would solve a few problems.
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Have you checked with the visiting nurse service they may take your insurance. As far as language I spent a year in Mexico and I don't speak Spanish I bought a translation program foe my laptop and when the data center manager English was not up to my explanations we switched to the laptops him in Spanish to English and me in English to spanish. It looked funny but it worked.
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Have you checked with the visiting nurse service they may take your insurance. As far as language I spent a year in Mexico and I don't speak Spanish I bought a translation program foe my laptop and when the data center manager English was not up to my explanations we switched to the laptops him in Spanish to English and me in English to spanish. It looked funny but it worked.
I thought about the translation program on iphone and stuff... but she's blind.... =(
obsidianom: Is it common for people to have fistula while doing PD? I need to discuss with my fiance, maybe that's what we should have her do in case PD failed or when she's hospitalized for anything... I need to look into that.. thanx for the info.
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Have you checked with the visiting nurse service they may take your insurance. As far as language I spent a year in Mexico and I don't speak Spanish I bought a translation program foe my laptop and when the data center manager English was not up to my explanations we switched to the laptops him in Spanish to English and me in English to spanish. It looked funny but it worked.
I thought about the translation program on iphone and stuff... but she's blind.... =(
obsidianom: Is it common for people to have fistula while doing PD? I need to discuss with my fiance, maybe that's what we should have her do in case PD failed or when she's hospitalized for anything... I need to look into that.. thanx for the info.
A fistula is not common in PD but there is no reason not to. It can mature and be ready for use anytime needed. It is the perfect backup and someday may be the primary access.