How do I manage until we can move?

Still being treated for a flare after a hospital stay (oral prednisone taper plus a new med; synthroid). FINALLY have a power mobility eval. scheduled for the end of the month (thru OVR), but I am finding it very difficult to manage around my home at present. We have a split level home; not the best fit for my situation, but we did not foresee me worsening as fast as I did.

We would like to move to a new home, but are not financially ready to sell/move. Plus, we really want to keep the kids in the same school district, so are limited by that. Add to that the need for the next home to be a ranch style home with enough space for my parents to come and stay (in their own space) for as long as they want or need... see what I mean?

The tentative plan is to buy a piece of land and have a home built by a custom-home company (have designs of choice and a model home). That still means it is a long way from a reality.

So....how on earth do I manage until then? There is no bath or bedroom on the first floor. The living room is sunken (8 in. down). There is a half bath on the lower level (5 steps down) as well as a bedroom currently used by my parents.

I'm trying to convince my husband that I need to move to the lower level bedroom (would still need to go all the way up to the upper level - 8 steps from the main floor) to bathe. The cost of renovations (to upgrade to a 3/4 bath) would be too much for us and may not be what a prospective buyer would like. It would mean moving the washer/dryer to the kitchen.

I'm just miserable right now; unable to really do anything but rest, sit, use my rollator around the house (while wearing my AFOs), and rely upon my visiting parents and my husband to do any housework/meal preparations. Climbing stairs or trying to get around w/out my rollator (or a walker I keep upstairs) weakens me still and triggers my asthma. I'm even beginning to go down the longer stairs on my bottom occasionally b/c I fear losing my balance. I already tend to practically crawl to go up the longer steps.

Power chair will be helpful here, but more helpful to go to and from work in the fall; very helpful in a new one-level home. But that's not the current reality.

Any ideas????

[chalknpens]

Thinking about this

I have been thinking about this since I read your post (because you are a teacher, and I care!)

Schools that cannot afford to build extensions on their schoolhouses somehow manage to rent "trailer" classrooms, and they are all handicap accessible, with at least a half bath.

I have no idea where they rent them, but maybe you could search out Temporary Classroom Trailers and see what's out there, whether it could be modified to include a kitchenette and shower/tub whatever for less cost than an addition.

I also wondered why you couldn't have a temporary ramp installed to help you at least go down or up easier. Or maybe one of those stair chair lifts that look so easy to use and install (remember, I said "look" easy.)

Ramps inside may make your home look too different to prospective buyers, who may not have the ability to visualize the space without ramps, but you could take photographs now to have on hand for those without "vision."

And if you feel that you can make modifications but will have a hard time affording them, contact your local vocational school for student help.

Just trying to add thoughts to the mix for a fellow teacher!

Be well!

[Cat Mom]

Try calling Easter Seals, they outfitted the home of a relative with those chairs that take you up and down the stairs on a rail. It was no charge and as well, they instaled it for free.

Thanks for the ideas!

I have been thinking about this since I read your post (because you are a teacher, and I care!)

Schools that cannot afford to build extensions on their schoolhouses somehow manage to rent "trailer" classrooms, and they are all handicap accessible, with at least a half bath.

I have no idea where they rent them, but maybe you could search out Temporary Classroom Trailers and see what's out there, whether it could be modified to include a kitchenette and shower/tub whatever for less cost than an addition.

I also wondered why you couldn't have a temporary ramp installed to help you at least go down or up easier. Or maybe one of those stair chair lifts that look so easy to use and install (remember, I said "look" easy.)

Ramps inside may make your home look too different to prospective buyers, who may not have the ability to visualize the space without ramps, but you could take photographs now to have on hand for those without "vision."

And if you feel that you can make modifications but will have a hard time affording them, contact your local vocational school for student help.

Just trying to add thoughts to the mix for a fellow teacher!

Be well!

Chalknpens,
I'm so very glad that you are still on here and very actively so! Very touched by your response. :-) We teachers always seem to find one another wherever we go/are!

I don't know where we would put a rented trailer from a school, right now. Never even thought of it, actually! What an interesting idea! I know I have both been taught (decades ago ) and taught in those trailers down in NC.

As for ramps in my home, there is really only one place where one would work inside but, if following ADA HC acessible rules/guidelines, it would take up the whole living room. I've looked on Craigslist for many months for a stair glide for either or both of the stairs; lowest price I can usually find is $1500. I MAY be able to get one through OVR...eventually....if it is evident that we won't be moving soon afterwards. May just have to "bite the bullet" for a stair glide if I can't find help to afford one.

As for outdoors, I've already talked to my father about the idea of having a ramp built onto the side of the porch (leading to our current driveway). Building on the side would not take away from the regular entryway of steps for when we do, eventually sell. Plus, my dad's church has a ministry of men who go around the area and build wheelchair ramps for people who need them; they had offered to come up here from NC a few months ago to build one for me. Perhaps we may see if they are still interested in doing so. Or...perhaps we could contact the college where I'm employed (a mix of vocational and community college w/ degrees). That's definitely worth looking into!

Thanks for the ideas!
***Do I see that you wrote a book?? Is it through MS World or published? Just curious; I'll bet it's a good read!

Thanks, Cat Mom!

Hadn't considered the Easter Seals; I guess I don't know all of the resources I should know. I should go back and look at some of the ones (resources) that NMSS sent to me, as well.

Words from Susan?

Susan,
Any advice you can offer?

[SusanD]

My apologies for the delay in getting to your post, I've been dealing with an acute episode of gastritis that put me out of commission for a bit.

I'm sorry to hear of your barriers. Let me support you with this, it's ok to take time for yourself and let others help. There's nothing 'wrong' or 'bad' about that. You would do the same if roles were reverse.

If you are still in the hospital, is there another facility you could go to for rehab?

If you're home....
Let me start by saying that exercise and activity is important. Be sure you move every part that you can in the morning and evening.... Do ankle pumps, work with items around the house for strengthening (i.e. cans for arm exercises). Do the best you can, you want to maintain/increase your endurance, range of motion and strength. Everything within your abilities.

For the home:
So many good suggestions have been made, it's certainly a challenge at this point, not seeing the set up adds to the challenge.

What is your insurance like? Would you be able to/ willing to go to a facility that would be safer for you and would provide therapy?

Is there a railing by any of the stairs? Both sides? If not, can you put in some? They can often make a significant difference

When someone can't access a bedroom/bathroom, typically the following may be recommended:

Bedside commode with removable bucket for toileting
Sponge baths
Mattress, Sleeper Sofa, or recliner in accessible room

You could use would to make a ramp for the sunken living room.

Any additional information you can add?
Hang in there

Thanks, Susan. Yes, I can tell you that there are railings on both sets of stairs; 2 on the set of 8 going up to the bedroom/baths and 1 going down to the family room w/ spare bedroom and half bath. The sunken living room is an 8 inch. drop and I was told that the "rule of thumb" is 1 ft. per in. in putting in a ramp. Is it ok to forego that in the meantime and use something steeper/shorter?

I really don't want to have to go to another facility (ie: several nursing home facilities where they may be able to "house" me for awhile). We have good insurance, but I don't know if it covers that or for how long. I think I'd rather sleep in the recliner or on the couch, than to do that (actually really did fall asleep in the recliner last night and was very "out of it"; my parents made sure I wanted to stay there and then covered me better; woke up in the recliner STILL wearing my glasses ).

My biggest drawback is that the only shower and tub are both upstairs. I can sponge bathe some, but I still need to shower to wash my hair. I do have AND use a shower chair. It really WOULD be nice if we could turn the downstairs half bath into a 3/4 bath, though. Then, I actually could stay down there if/when necessary.

The other difficulty is that my daughter is very "needy" right now. Last spring/summer she was diagnosed (lengthy process) with OCD/Anxiety and ADHD. Whenever I am not doing well, she struggles. She is not on any medication, though it was recommended. The pediatrician wanted us to at least try her on an extended release med for ADHD. I am now wishing we had or that my hubby will agree to it. She is doing much better in school this year, but I think it has more to do with having a different teacher and sitting up front than anything else.

Susan, it is painful for me to not be as involved as I'd like to be with my children (schoolwork, helping them w/ cleaning their rooms, and/or just being able to go to them when they really need "Mommy." They are 11 and 9 (dd), so they can do a lot more for themselves, but my dh ends up helping them/motivating them to do homework and making sure they get ready for bed. Tonight, my dd had to go upstairs to put away her clean clothes, but was scared to go by herself. I had to go in there with her. Tried to just lie on the bed, but she was still scared. I had to sit in a chair and supervise it all.

Sorry to go off on the 'rabbit trail' a bit, but the struggles we've had w/ my dd have been a source of stress to the whole family. I feel like if I leave that out, it doesn't paint as clear of a picture. Thanks for (hopefully) reading through this, and for the helpful information you gave. I hope your stomach is improving.

[SusanD]

Thank you for sharing so much with me, I can truly empathize with you on several levels.

I understand the desire to stay home and I want to think of all things possible that can help you. There are trays that go from a sink to back of chair for you to lean back on for someone to wash your hair. You can get a faucet that extends. Perhaps someone can do that for you. There are also shampoos that don't need to be rinsed out.

Sleeping in recliner isn't bad, I've done it for weeks now with my stomach problems!! I did get used to it.

You are correct with the ramp ratio. Some people do shorten ramps for different reasons and often manage the slope fine. First you have to see how long you can realistically make it and then, if reasonable, as long as you can hold on to either a walker (make ramp wide enough) or be in scooter, that should be manageable...

Is there a way the kids can help you putting a twist on things... I'm thinking instead of the need for help because you can't or struggling, let them know that with their help, you are better. Sometimes changing the words and putting a positive swing to the chores and times of assistance makes their interpretation of it all better.

I went through a difficult time when my mobility was significantly affected. I couldn't do anything with the kids' school including driving them and I couldn't go to many activities they had. I relied on other people and missed out on several things. Although I didn't like it, in the end it turned out okay.
I had my kids bring the homework to me by a certain time if they needed help because of the extreme fatigue I would get at night. I had them participate more in chores (no choice) but would say things like 'I wish I thought to do it that way, it seemed easier and looks so nice'... Basically accepting what they did, made suggestions if need be, and turning everything I possibly could into a positive to them. And as a result, how much better I could feel by giving me time to rest. Because of that we could play a game....

This is example of what I did. Mainly for the kids to not feel sorry for me, troubled because they were afraid I was hurting or struggling, and so on.
In the end, it really did help me and I realized kids are truly more resilient than we give them credit for. My daughter has ADHD and it seemed to give her direction when at home....(sometimes!). The kids grew up a lot through those years and so did I. Remember, when someone has MS, the family has MS.

Thank you, Susan. This is helpful.

Where do you find the trays you mentioned for washing hair at a sink?

Working on getting the kids to help out, but dd makes it difficult w/ her extreme fears/anxieties. When she wants to help, she can be very helpful and loving.

My ds is more helpful, usually, b/c he can easily go in any room to get or do something for me. Currently, poor guy is sick w/ very sore throat and possible ear infection. Praying I don't catch it....

[SusanD]

You can get hair washing trays online or at some drugstores (walgreens, CVS), & stores Walmart, target etc

I don't know what stores you have by your home but make things easier and call around to see who might have them. Or simply put in 'hair washing trays' in search engine and many will come up.

Kids will help, more on some days than others and more for certain things than others. Sounds like you're doing all the right things.
I will continue to think of options to increase your independence within your home barriers

Let me know how things are going

Thanks, again, Susan! :-)

[skyeblue]

I just noticed this thread.

Our family room is sunken and the step down is steeper than normal ( about 18 inches ). When my husband could no longer get down there we bought a 7 foot portable ramp which allows me to roll him down and back in his wheelchair. The incline is still too steep for him to do it on his own in his wc, but it at least allows us to also get him out of the house through the patio doors too when necessary. We also have a stairglide which he uses to get to the second floor. Eventually we'll have to move but for now we're getting by with these modifications.

Just wanted to share my experience. Best of luck!!

Thanks, Skyeblue. It's nice to hear from someone who can relate to my situation.

I'm glad to hear that you have a stairglide for your husband to use. I just had my power mobility/wc evaluation done today. The paperwork has been started, now, to get a "Quickie" Pulse 6. Since I am certain my insurance will turn it down, the process is going to take longer than I'd like. It can't be helped, though, b/c I'm going through OVR and you simply have to go through all of the proper channels.

In the meantime, I found myself reliving my statement, today, that started this thread. Today, I had a lot to do (go by my daughter's school to give her a breathing treatment and drop off the asthma inhalers for both her and her brother, go straight to the hospital for the wc eval., order refills on prescriptions, and help my daughter finish her simple machines project)...it was a lot on me physically and emotionally.

I did take a nap right after a late lunch; a recognized necessity. I didn't get up until after the kids had already come home from school. I sent some emails and waited for my Provigil to "kick in" a bit while my husband helped my daughter with her math homework. I also had to make sure she practiced piano and had another breathing treatment before we got started on her project.

By the time we started on my dd's project, my body was already "protesting." To make matters worse, I have to mention that my dd has been dx'ed with anxiety disorder/OCD with ADHD as an underlying problem. For the past few weeks, her anxiety level has steadily increased. This is very stressful to me, b/c it means that she is basically afraid to go anywhere in our own home by herself. I end up moving around and using the stairs more often than I'd like.

After we finished the project, I was thoroughly exhausted and feeling awful. I started reheating some leftovers when my parents returned from shopping at Sam's Club. I hated to do it, but I had to excuse myself and "crash" for an hour in my bed. I just wanted to cry. I could, once again, see just how difficult it is to manage on a daily basis in a home that is no longer "friendly" to me.

I'm going to check back with OVR about the stair lift tomorrow, and also check into some other possibilities for getting one. One of the hospital employees who was involved in the eval. today, gave me a list of places to find medical equipment (ie: an extra walker to keep in the lower level) and some information on other options for home modifications. I'm feeling quite discouraged and desperate, today. I simply have to find some ways to manage better; for the sake of my health and for my family.

Prayers are most certainly welcome. I know I'm praying for all of the help I can get for each moment of each day.

[SusanD]

I hope things are settling down a bit for you.
How are things going?