What is it like to be in a partnership where one person has limited mobility?
October 14, 2015 10:04 PM Subscribe
What are the adaptations in your house that you've made to make your life a little easier (e.g., walk-in shower, service dog)? Is the limited mobility something you think about every day, or does it just become a part of your life after a while?
My partner and I have been long distance due to school, but the idea as of now is to move in together in the next two years. I realize that the transition from long-distance to living together is significant to begin with, but what about when progressive limited mobility is also in the mix? My partner has a progressive neuromuscular disease and cannot lift heavy objects and needs an electric scooter to get around. In the next 2 years he will need an electric wheelchair full time.
Does having a partner with limited mobility (or being the mobility-limited partner yourself) make having kids impossible or affect your ability to parent? Does resentment build up when you need to run to the store to get milk, those errands always fall to one person, and how can we avoid that? Do you ever wish that you could go skiing/hiking/rock climbing?
Or, is moving in together a horrible idea and something I should think twice about for other reasons of which I'm not yet aware?
My partner and I have been long distance due to school, but the idea as of now is to move in together in the next two years. I realize that the transition from long-distance to living together is significant to begin with, but what about when progressive limited mobility is also in the mix? My partner has a progressive neuromuscular disease and cannot lift heavy objects and needs an electric scooter to get around. In the next 2 years he will need an electric wheelchair full time.
Does having a partner with limited mobility (or being the mobility-limited partner yourself) make having kids impossible or affect your ability to parent? Does resentment build up when you need to run to the store to get milk, those errands always fall to one person, and how can we avoid that? Do you ever wish that you could go skiing/hiking/rock climbing?
Or, is moving in together a horrible idea and something I should think twice about for other reasons of which I'm not yet aware?
Very sturdy hand grips in the bathroom, and any place where the limited mobility person has to change levels, seating, etc. An 'electric chair' might give a welcome - if expensive - change of seating, but with progressive disease it might be a poor investment.
Also, here in Portland, Safeway delivers groceries.
posted by Cranberry at 1:06 AM on October 15, 2015 [1 favorite]
Also, here in Portland, Safeway delivers groceries.
posted by Cranberry at 1:06 AM on October 15, 2015 [1 favorite]
I'm a wheelchair user.
- Online grocery shopping and home delivery is a Good Thing. I do the bulk of the grocery shopping online.
- I can pop down to the local shops in my wheelchair to pick things up. Obviously, this is subject to whether the local shops are wheelchair accessible (level entrance), and whether there are suitable footpaths between your house and the shops. You'd be surprised how many bags of groceries you can hang off the back of a power wheelchair.
- Wheelchair users can still
* be home to let tradespeople in for repairs
* do planning tasks eg we need our [widget] serviced, ring up and book widget-servicing.
* in some cases, chop veges/cook while sitting (if kitchen benches are low enough)
posted by Year of meteors at 2:45 AM on October 15, 2015
- Online grocery shopping and home delivery is a Good Thing. I do the bulk of the grocery shopping online.
- I can pop down to the local shops in my wheelchair to pick things up. Obviously, this is subject to whether the local shops are wheelchair accessible (level entrance), and whether there are suitable footpaths between your house and the shops. You'd be surprised how many bags of groceries you can hang off the back of a power wheelchair.
- Wheelchair users can still
* be home to let tradespeople in for repairs
* do planning tasks eg we need our [widget] serviced, ring up and book widget-servicing.
* in some cases, chop veges/cook while sitting (if kitchen benches are low enough)
posted by Year of meteors at 2:45 AM on October 15, 2015
My dad had health issues which gave him significantly limited and degenerative mobility over the last year and a half of his life. It took a pretty big toll on my mother. She went from being his assistant on a lot of things to being the strong one. (And that's not to say he didn't attempt to use a chainsaw from a wheelchair - because he did).
There were points of frustration for both of them. He found himself unable to do the things he used to do. And she found herself overwhelmed with having to provide increased care and still take care of everything around their home. Over time neither of them was exactly the person they were before.
The simplest things were the walkers and the wheel chairs. But there were also railings that needed to be installed on stairs. He outweighed her by about 2x1, and my mom was legitimately concerned that if he fell she couldn't get him up on her own. She got to know her neighbors real well and they would help her on bad days, where helping him move him required more than she could lift by herself.
posted by Nanukthedog at 3:51 AM on October 15, 2015 [1 favorite]
There were points of frustration for both of them. He found himself unable to do the things he used to do. And she found herself overwhelmed with having to provide increased care and still take care of everything around their home. Over time neither of them was exactly the person they were before.
The simplest things were the walkers and the wheel chairs. But there were also railings that needed to be installed on stairs. He outweighed her by about 2x1, and my mom was legitimately concerned that if he fell she couldn't get him up on her own. She got to know her neighbors real well and they would help her on bad days, where helping him move him required more than she could lift by herself.
posted by Nanukthedog at 3:51 AM on October 15, 2015 [1 favorite]
Does your partner drive? If so, will he lose the ability to drive when he's in a wheelchair full time? I think it's very important for someone with mobility challenges - low vision, needs a wheelchair or scooter, etc. - to live where they're not trapped in the house without a partner or caregiver to schlep them around (as much as possible). So a place that is located near a store, library, and so on, rather than in outer suburbia, is probably your best bet.
A few links to sites which discuss house design for persons with disabilities:
How To Design a House for Physically Disabled People
Tips on Building an Accessible Home
Pinterest board of disability friendly homes
The more chores you can farm out, the easier your lives will be, and you can spend time with each other having fun, not spending your "spoons" on housework and errands: Hire a cleaning service, use Blue Apron for preplanned meals, shop online and get items delivered whenever possible, have a dishwasher rather than washing dishes by hand, and so on.
posted by Rosie M. Banks at 4:16 AM on October 15, 2015 [4 favorites]
A few links to sites which discuss house design for persons with disabilities:
How To Design a House for Physically Disabled People
Tips on Building an Accessible Home
Pinterest board of disability friendly homes
The more chores you can farm out, the easier your lives will be, and you can spend time with each other having fun, not spending your "spoons" on housework and errands: Hire a cleaning service, use Blue Apron for preplanned meals, shop online and get items delivered whenever possible, have a dishwasher rather than washing dishes by hand, and so on.
posted by Rosie M. Banks at 4:16 AM on October 15, 2015 [4 favorites]
Echoing some of Nanukthedog's points: I know someone with secondary progressive MS, and who's had it for about a dozen years now. They're now at the point where they are unable to get themselves in and our of their chair, and are starting to have issues with things like feeding themselves. So, I'm speaking as someone with experience watching a couple go through this long term, and with a member of that couple having even more limited mobility than your partner:
-Build a network of friends-- have people who are willing to cook occasionally, come and visit when you're away, do the random little things around the house or for your partner, etc.
-Hire a cleaning person, or other household help
-If things might get to a point where your partner is unable to get in and out of their chair on their own, look into part time (or potentially, full time) help with that
-If you're going to be together long term, get a financial planner. Medical expenses/retirement/everything will look completely different (and a lot more expensive). If there's even a remote possibility that you're going to need in home help in the future, start saving now, particularly if there's the possibility your partner might have trouble finding work. Most insurance will not cover long term in home care. And then there's other nasty surprises-- like, maybe your or your partner's insurance covers a grand total of *one* power chair in their life time. Power chairs don't last forever, and they're expensive.
-Find healthy coping habits. Caregiver burnout is real. It sucks for both you and the person you're taking care of. Take care of yourself. And don't try and do everything yourself-- let your partner, and that network of friends, and hired help do the things they can do.
-Seriously, take care of yourself. If you have your own health problems, physical or mental, make sure you take care of them. Give yourself breaks, and don't feel guilt about them. If you don't, you will grow resentful, and it will be bad. Really bad.
posted by damayanti at 5:24 AM on October 15, 2015 [1 favorite]
-Build a network of friends-- have people who are willing to cook occasionally, come and visit when you're away, do the random little things around the house or for your partner, etc.
-Hire a cleaning person, or other household help
-If things might get to a point where your partner is unable to get in and out of their chair on their own, look into part time (or potentially, full time) help with that
-If you're going to be together long term, get a financial planner. Medical expenses/retirement/everything will look completely different (and a lot more expensive). If there's even a remote possibility that you're going to need in home help in the future, start saving now, particularly if there's the possibility your partner might have trouble finding work. Most insurance will not cover long term in home care. And then there's other nasty surprises-- like, maybe your or your partner's insurance covers a grand total of *one* power chair in their life time. Power chairs don't last forever, and they're expensive.
-Find healthy coping habits. Caregiver burnout is real. It sucks for both you and the person you're taking care of. Take care of yourself. And don't try and do everything yourself-- let your partner, and that network of friends, and hired help do the things they can do.
-Seriously, take care of yourself. If you have your own health problems, physical or mental, make sure you take care of them. Give yourself breaks, and don't feel guilt about them. If you don't, you will grow resentful, and it will be bad. Really bad.
posted by damayanti at 5:24 AM on October 15, 2015 [1 favorite]
Your partner has restrictions on lifting heavy objects. Children are heavy objects. This will impact his ability to parent in the early childhood years. You will need some help to get through it.
posted by crazycanuck at 6:51 AM on October 15, 2015
posted by crazycanuck at 6:51 AM on October 15, 2015
In my jurisdiction, living with someone with an income cuts off all disability-related support for the disabled person (yes, that makes zero sense), so be sure to fully examine how any government support you partner is (and will be eligible for as their condition progresses) is affected by your income.
posted by saucysault at 9:13 AM on October 15, 2015 [2 favorites]
posted by saucysault at 9:13 AM on October 15, 2015 [2 favorites]
I've worked with medically fragile children in wheelchairs and their families. Here is my perspective.
It's really easy to fall into the caregiver role, but that also makes the romantic relationship difficult because as their condition progresses, they can become so reliant on you, and that can be a really suffocating feeling. This can be a scary feeling if you haven't even committed to marriage, and even if you are, because sometimes a person wants to leave but feel like they can't. It's really important you have a support system, and that you have time you can spend doing what you want, even if you need to hire a home health aide for blocks of time at some point, depending on the progression.
You are really susceptible to injuries. There are proper ways to lift someone, and those methods aren't usually used because it takes added equipment and can be slower than just moving the person yourself - and that is why back problems creep up a lot. You're not going to notice at first, but after a while (often years) your back is going to end up messed up from all the strain you've put on it. It's all fine until one day it isn't.
Depending on when you have kids and how fast the disease progresses, you may very well find yourself a caregiver for both. If he can't lift heavy objects, taking care of some aspects of raising children will be difficult, while others will be fine. Can he pull a toddler away from a dangerous situation? (the child is about to touch a hot stove for example)? At what weight is an infant going to be too heavy? Are you going to have to be a mediator for childcare (for example, are you going to have to place the baby in his arms/strapped to him securely for feeding? The more you have to be the go-between, the more restrictive it probably is going to feel. Another consideration that matters before kids, but a lot more after is household chores. Is laundry to heavy? You are definitely going to want a front-loading machine. Will he be able to bend to pick up toys on the floor? Does reachers are great, but they do have some limitations.
I think you should really investigate into how his specific disease progresses, and what further limitations he will have at each stage.
In terms of housing, think about things like having a ground floor bedroom, an attached bathroom with enough space just not for a wheelchair to fit, but for maneuvering it, especially if he will eventually need your help. Walk in-showers (with either a built-in bench or an add-on) - it is a huge pain trying to lift someone over the ledge of a tub, and get them back out. As I said earlier, a front loading washing machine. The kitchen can always be a challenge - you're going to want to place things where he can reach them, so think about how he's going to heat up leftovers if he is confined to the chair. Is the food low enough in the fridge? Does he have the fine motor skills to open the container? Are plates and utensils accessible? Is the microwave situated where he can operate it? Does he have the fine motor to push the buttons? Etc, etc.
Also think about how he's going to get into the house. Will you have a ramp going to the front door? Will he continue to be able to open the door using a key? Or will you need to use an alternative method? Think about your plan in case of emergency such as a fire - what's your exit strategy? Think about the bedroom - how tall is the bed, if it's at the proper height (not too tall), using the bed (possibly with handrails) can make transitioning as long as he's able to bear weight much easier.
On an ending note, definitely consider transportation. Does he drive? Will he continue to do so? Does he already have a wheelchair van (I assume no)? Electric wheelchairs don't fold and are really, really heavy. Living where there is solid transportation (obviously he would probably qualify for some services, but as someone who can't drive, the freedom to just go and do something you want to do without needing to call and make an appointment is a big deal). Do or will you live in a place where he can get to the grocery store or the movies or go out for lunch by himself if he wants? Do not underestimate this. Transportation is a huge battle.
So much is specific to the individual and the disorder, but a progressive neurological disease is a lot different from a spinal cord injury, even if both may use wheelchairs.
posted by Aranquis at 10:05 AM on October 15, 2015 [1 favorite]
It's really easy to fall into the caregiver role, but that also makes the romantic relationship difficult because as their condition progresses, they can become so reliant on you, and that can be a really suffocating feeling. This can be a scary feeling if you haven't even committed to marriage, and even if you are, because sometimes a person wants to leave but feel like they can't. It's really important you have a support system, and that you have time you can spend doing what you want, even if you need to hire a home health aide for blocks of time at some point, depending on the progression.
You are really susceptible to injuries. There are proper ways to lift someone, and those methods aren't usually used because it takes added equipment and can be slower than just moving the person yourself - and that is why back problems creep up a lot. You're not going to notice at first, but after a while (often years) your back is going to end up messed up from all the strain you've put on it. It's all fine until one day it isn't.
Depending on when you have kids and how fast the disease progresses, you may very well find yourself a caregiver for both. If he can't lift heavy objects, taking care of some aspects of raising children will be difficult, while others will be fine. Can he pull a toddler away from a dangerous situation? (the child is about to touch a hot stove for example)? At what weight is an infant going to be too heavy? Are you going to have to be a mediator for childcare (for example, are you going to have to place the baby in his arms/strapped to him securely for feeding? The more you have to be the go-between, the more restrictive it probably is going to feel. Another consideration that matters before kids, but a lot more after is household chores. Is laundry to heavy? You are definitely going to want a front-loading machine. Will he be able to bend to pick up toys on the floor? Does reachers are great, but they do have some limitations.
I think you should really investigate into how his specific disease progresses, and what further limitations he will have at each stage.
In terms of housing, think about things like having a ground floor bedroom, an attached bathroom with enough space just not for a wheelchair to fit, but for maneuvering it, especially if he will eventually need your help. Walk in-showers (with either a built-in bench or an add-on) - it is a huge pain trying to lift someone over the ledge of a tub, and get them back out. As I said earlier, a front loading washing machine. The kitchen can always be a challenge - you're going to want to place things where he can reach them, so think about how he's going to heat up leftovers if he is confined to the chair. Is the food low enough in the fridge? Does he have the fine motor skills to open the container? Are plates and utensils accessible? Is the microwave situated where he can operate it? Does he have the fine motor to push the buttons? Etc, etc.
Also think about how he's going to get into the house. Will you have a ramp going to the front door? Will he continue to be able to open the door using a key? Or will you need to use an alternative method? Think about your plan in case of emergency such as a fire - what's your exit strategy? Think about the bedroom - how tall is the bed, if it's at the proper height (not too tall), using the bed (possibly with handrails) can make transitioning as long as he's able to bear weight much easier.
On an ending note, definitely consider transportation. Does he drive? Will he continue to do so? Does he already have a wheelchair van (I assume no)? Electric wheelchairs don't fold and are really, really heavy. Living where there is solid transportation (obviously he would probably qualify for some services, but as someone who can't drive, the freedom to just go and do something you want to do without needing to call and make an appointment is a big deal). Do or will you live in a place where he can get to the grocery store or the movies or go out for lunch by himself if he wants? Do not underestimate this. Transportation is a huge battle.
So much is specific to the individual and the disorder, but a progressive neurological disease is a lot different from a spinal cord injury, even if both may use wheelchairs.
posted by Aranquis at 10:05 AM on October 15, 2015 [1 favorite]
Mine does not have quite the same issues, but he does have a chronic health condition which places restrictions on his activities. Here are some things we have found helpful:
- Not owning a home. We don't have to paint, do repairs, shovel snow etc. I know he cannot do these things, so I have to ask myself would I rather spend my weekend raking leaves, or spend it being with him? My cousin bought and renovated a whole house by himself. More power to him, but we are not doing that.
- On a related note, you should assume you will do every chore, and you both shopuld be prepared to spend money which might otherwise have gone to other things on some outsourcing. I would rather save the money right now, but we have a standing agreement that of kids ever enter the picture, we will pay someone to clean our house.
- As others have said, he may have other strengths as far as contributing to the household. I don't drive (I am working on that, but it is a two-year process here) so he does most of the car-related stuff. For example, a friend just had a baby. She lives far away. Guess who is giving up a Saturday to drive me there and visit her?
- On a related note, I require a licensed driver to be in the car with me every time I drive for the first year. Guess who that will be? All he has to do is sit and watch, but having a license will improve both of our lives so I appreciate so much that he is helping me achieve this goal.
There are some other little things, both good and bad, that I have mentioned before in similar AskMes. One thing I found to be a huge adjustment when I moved in was that I saw a lot more of the hard stuff than I had before. I think when we were still dating, he would sometimes suck it up and put on a face when he wasn't feeling well. In his own home, with me, he is free to be himself and that sometimes means I see him when he's not his best. He has gotten a lot better about this over the years, and will often text me on my way home to give me a heads-up, so that I don't assume his withdrawn behaviour is because of something I did.
posted by JoannaC at 10:37 AM on October 15, 2015
- Not owning a home. We don't have to paint, do repairs, shovel snow etc. I know he cannot do these things, so I have to ask myself would I rather spend my weekend raking leaves, or spend it being with him? My cousin bought and renovated a whole house by himself. More power to him, but we are not doing that.
- On a related note, you should assume you will do every chore, and you both shopuld be prepared to spend money which might otherwise have gone to other things on some outsourcing. I would rather save the money right now, but we have a standing agreement that of kids ever enter the picture, we will pay someone to clean our house.
- As others have said, he may have other strengths as far as contributing to the household. I don't drive (I am working on that, but it is a two-year process here) so he does most of the car-related stuff. For example, a friend just had a baby. She lives far away. Guess who is giving up a Saturday to drive me there and visit her?
- On a related note, I require a licensed driver to be in the car with me every time I drive for the first year. Guess who that will be? All he has to do is sit and watch, but having a license will improve both of our lives so I appreciate so much that he is helping me achieve this goal.
There are some other little things, both good and bad, that I have mentioned before in similar AskMes. One thing I found to be a huge adjustment when I moved in was that I saw a lot more of the hard stuff than I had before. I think when we were still dating, he would sometimes suck it up and put on a face when he wasn't feeling well. In his own home, with me, he is free to be himself and that sometimes means I see him when he's not his best. He has gotten a lot better about this over the years, and will often text me on my way home to give me a heads-up, so that I don't assume his withdrawn behaviour is because of something I did.
posted by JoannaC at 10:37 AM on October 15, 2015
Time management becomes more important when limited mobility enters the picture, as there are some tasks that may have to happen sequentially rather than simultaneously.
For instance if your partner needs help putting on a winter coat, that means you will put on your coat, and then you help him put on his coat (which is probably a bit slower), so coat time now takes more than twice as long as you're used to. Add kids into the mix and "putting-on-coats-time" may be 5x longer than what you're currently used to. And this kind of time-expansion might affect a lot of tasks- transfers in/out of bed and vehicles, showering, etc. This doesn't have to be a problem, but it is a thing.
If you can afford to have help with childcare, housekeeping, and ADL (activities of daily living), life gets much easier. I know a couple where one member has major mobility issues but they also have great cashflow, so they employ a live-in housekeeper who helps with the kids and housework and I assume some ADL for the spouse w/ the disability. From what I can see, their life is amazing.
posted by pseudostrabismus at 1:40 PM on October 15, 2015
For instance if your partner needs help putting on a winter coat, that means you will put on your coat, and then you help him put on his coat (which is probably a bit slower), so coat time now takes more than twice as long as you're used to. Add kids into the mix and "putting-on-coats-time" may be 5x longer than what you're currently used to. And this kind of time-expansion might affect a lot of tasks- transfers in/out of bed and vehicles, showering, etc. This doesn't have to be a problem, but it is a thing.
If you can afford to have help with childcare, housekeeping, and ADL (activities of daily living), life gets much easier. I know a couple where one member has major mobility issues but they also have great cashflow, so they employ a live-in housekeeper who helps with the kids and housework and I assume some ADL for the spouse w/ the disability. From what I can see, their life is amazing.
posted by pseudostrabismus at 1:40 PM on October 15, 2015
Couple household adaptations that can add to overall quality of life:
Walk-in shower (that way the switch to a shower chair is easy when the time comes)
Shower on a hose instead of overhead. Lever-shaped taps are easier to operate w/ less manual dexterity than knobs.
Pocket doors wherever possible (leaves more space to stash the wheelchair)
Portable folding ramp that can live in your vehicle- improves accessibility when going to restaurants, etc
Consider living in a building with a concierge. Befriend the concierge, tip them well, and in a pinch they can come upstairs and help if needed. You may even be able to negotiate a part-time job and separate pay rate for them-- for instance they can come upstairs for 20 mins to help the person get settled in each evening when they arrive home from work.
Front-loading washing machine located on the same floor as the main bedroom/bathroom. If the person's bladder/bathroom habits change, you may end up needing to do extra laundry to clean bedding, pads, washcloths, etc., and showering w/ assistive devices sometimes means needing extra towels.
Adaptive clothing for wheelchair users- can make dressing easier and look great when sitting. From what I've heard those pants in particular are flattering, comfortable, and awesome.
Metal drinking straws if the person has a hard time holding a cup. They work in hot or cold liquids, reduce trash, and are just generally awesome. Plus drinking hot coffee through a plastic straw every day has to be unhealthy!
posted by pseudostrabismus at 1:59 PM on October 15, 2015
Walk-in shower (that way the switch to a shower chair is easy when the time comes)
Shower on a hose instead of overhead. Lever-shaped taps are easier to operate w/ less manual dexterity than knobs.
Pocket doors wherever possible (leaves more space to stash the wheelchair)
Portable folding ramp that can live in your vehicle- improves accessibility when going to restaurants, etc
Consider living in a building with a concierge. Befriend the concierge, tip them well, and in a pinch they can come upstairs and help if needed. You may even be able to negotiate a part-time job and separate pay rate for them-- for instance they can come upstairs for 20 mins to help the person get settled in each evening when they arrive home from work.
Front-loading washing machine located on the same floor as the main bedroom/bathroom. If the person's bladder/bathroom habits change, you may end up needing to do extra laundry to clean bedding, pads, washcloths, etc., and showering w/ assistive devices sometimes means needing extra towels.
Adaptive clothing for wheelchair users- can make dressing easier and look great when sitting. From what I've heard those pants in particular are flattering, comfortable, and awesome.
Metal drinking straws if the person has a hard time holding a cup. They work in hot or cold liquids, reduce trash, and are just generally awesome. Plus drinking hot coffee through a plastic straw every day has to be unhealthy!
posted by pseudostrabismus at 1:59 PM on October 15, 2015
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Mobility impairment does not mean not able to be useful. A person who cannot do physical chores can still be your best friend and confidant, tell you funny stories, soothe and calm you after a hard day at work. Some days the best thing I do all day is make my housemates laugh.
There are no kids in the mix but I know that me and my wheelchair are much faster to round up and pack into the car than small kids with their carseats and strollers and diaper bags and toys, etc.
And yes, sometimes I wish I could go rock climbing.
posted by a humble nudibranch at 11:45 PM on October 14, 2015 [8 favorites]