Hi,
I wanted to get some thoughts on something that we're discussing in our family. My parents, who are fantastic, brought up the possibility of creating what they jokingly called a commune. Basically, they're willing to sell their house and use the money to build themselves an apartment below our house. Or they've offered to remodel their own house to make it accessible and create a larger apartment downstairs for themselves. The idea is that we would have some support as Aidan grows older.

I wanted to know other people's thoughts on that possibility, especially people with older sons. It's very hard to think about the future, and I am sad about the prospect of giving up some independence of my own, but we need to face facts and plan responsibly.

Does anyone have any thoughts about the situation?

Thanks,
Mindy

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Well, first I must say it sounds like you are truly blessed with your parents. I have been trying to get my parents to move closer (they live in CA and us in CO) to help, but they aren't interested at all. Have you thought of looking for two houses next to each other? Or, buiding in a new development next to each other? Our neighbors across the street built for themselves and his elderly mother. It works out really well, but everyone has their own space. I am really good friends with the Daughter-in-law and for her it is a little close, where for the son it isn't. How does your husband feel about the plan? Honestly? I bet it would be much harder for him, than you! But, the bottom line, I would give anything for the kind of help your parents are offering!!!

Ang :)
Yes, they are amazing. I am very lucky in that way.

We haven't thought about going somewhere new just because that way, everyone would have to change.

A couple of pieces that enter into it:
1. We live very close to my husband's job - he's a teacher. We're only 1 mile from his school. If we moved where my parents are, it would be across the bridge, a drive which is only 20 minutes with no traffic, but often over 1 hour in rush hour.
2. Aidan goes to school in our local district. It's the kind of district where he will go to school with the same kids all through high school. If we move where my parents are, he'll be in the seattle school district. He'll have access to a great elementary and middle school, but then people will most likely scatter to different high schools when it's time.

3. My parents' house is next to all sorts of restaurants, movie theaters, etc, within walking distance, which is great for them as they age. Our house is a bit further away from that stuff.

Thanks.
Mindy, through several unfortunate circumstances, we ended up living in the home that my grandparents built and my parents built a new home on the front of the property. We are neighbors...but about 1/2 acre apart and it works out great My father had a stroke just before Seph's diagnosis, so they wanted a smaller, more accessible home for them and donated the bigger 'family' home to my sister and I. We then bought my sister out. It is great. As my parents age and dad slows due to the stroke, we are there for them, and they are there for us. It is nice and we still have our own spaces...many days we don't even see each other, but we know we are there.

If you all are close and the proper boundaries are set, I would think it would be good for you all too.

lori
Well, you are very lucky to have such parents to support you as they do, many aren't so lucky! I say if you have a great relationship with your parents and your extended family.....I cheer you on to go for it!!! If they are offering to help you and your son thru the Duchhenne Journey then you are one of the blessed ones.

Me I have my parents right here in town, my son can get to their house in his chair ( so, they aren't far ). I am Adam's ( he is 23 yrs. old now ) 24/7 caregiver and get disrupted sleep every night due to having to reposition him ( he hollers for me ), sometimes it is every hr. on the hr. sometimes it can be up to 2 1/2 hrs. before he hollers then maybe the next time a hr.. I just need a good nights sleep ( have been doing this since 2002 )........my parents know this, have gone to counselors because I have burnout from no sleep.....and do you think they would offer to come over and take a shift once in awhile so I can get some sleep....the answer is no.....I recently remarried May 10, 2008.....couldn't go on a honeymoon had no one to care for my son.....I don't get respite care, I don't get many breaks, it will get harder down the road, so, don't throw good loving help and support out the door....believe me you will need them throughtout the whole Duchenne Journey.....not many have what you have, go ahead and embrace it!!!!

Cheryl
Me I would suggest if they were my parents offering this to me.....that moving would be harder on your family than if they were to move to your location....the school situation I understand completely.....having your son start at one school district and grow up and move to each grade thru high school till graduation would be awesome for your son and for his friends and peers.......starting into a new Jr. High school or High School nowadays can be very stressful for a student who doesn't have a disability.....the fitting in part, is your son shy or outgoing......then you will have to start all over again in a new school system re: issues like you did when he first started school.....being in that one school district they will grow with him too, they will learn from him and then the students will understand his disability, help him when he gets tired of needs something carried when he gets weaker, etc..

It depends how you all handle new changes in your life, dealing with the Duchenne Journey leaves your emotions exhausted at times.

Being in a small city with 2 different elem. schools, 1 middle school ( till 2 yrs. ago we had 2, they made a new middle school, all handicap accessible now ) and 1 high school and 2 colleges, my son was lucky as where when we moved to the other part of town he would had to have transfer over to another elem. school, but, after talking to the principal they decided it best to keep Adam right where he was because his friends were there the staff already knew all about his disability and made changes to benefit him when needed, then I wouldn't have to start all over again with educating the staff over at the other school, Jr. high he had to go to one of the schools as the other was older and not accessible throughout the school, the high school had already made changes as there was one prior DMD boy there and 2 boys that were paralyzed from accidents. We also moved to another town because we couldn't find a first floor apt. where the bathroom was accessible to him, I was allowed to keep Adam in the school district he was already in, it was agreeded that it would be hard on Adam where he was so shy, they didn't have a handicap school bus that they could schedule to travel that far and stiil manage to do their disabled student route....so, they paid me for mileage to bring him to school and pick him back up. So, we have been very lucky school wise!!! Apt. wise was very hard on us once he was in his motorized wheelchair, aren't too many around here. Eventually we did get into a apt. all first floor, bathroom had a tub, which thru help we managed to get them change the tub out for a roll in shower.....it was rented as a handicap bathroom apt., they had to make updated changes.....it was more for a elderly person and not for someone in a wheelchair....too many make them thinking of paralyzed people in wheelchairs that have upper body strength to do things on their own.

Cheryl




I know you will do what is best because of the parents you have,
Cheryl
Cheryl Markey said:
Well, you are very lucky to have such parents to support you as they do, many aren't so lucky! I say if you have a great relationship with your parents and your extended family.....I cheer you on to go for it!!! If they are offering to help you and your son thru the Duchhenne Journey then you are one of the blessed ones.
Me I have my parents right here in town, my son can get to their house in his chair ( so, they aren't far ). I am Adam's ( he is 23 yrs. old now ) 24/7 caregiver and get disrupted sleep every night due to having to reposition him ( he hollers for me ), sometimes it is every hr. on the hr. sometimes it can be up to 2 1/2 hrs. before he hollers then maybe the next time a hr.. I just need a good nights sleep ( have been doing this since 2002 )........my parents know this, have gone to counselors because I have burnout from no sleep.....and do you think they would offer to come over and take a shift once in awhile so I can get some sleep....the answer is no.....I recently remarried May 10, 2008.....couldn't go on a honeymoon had no one to care for my son.....I don't get respite care, I don't get many breaks, it will get harder down the road, so, don't throw good loving help and support out the door....believe me you will need them throughtout the whole Duchenne Journey.....not many have what you have, go ahead and embrace it!!!!
Cheryl
Cheryl,
I think you should look into the Social Security System b/c I think your son is what they referred to as "disabled." When this happens, I believe he qualifies for benefits. One of the benefits is respite care - like someone to come and and care for him while you take a break. Look into the Department of Disability or Social Security. You could definitely use the respite care....Char Burke
He has been getting SSI since he was in elementary school, every state is different on some things, he qualified for respite care before he was 18, it was hard trying to find someone to come and do it, have been down all the roads re; what he can get and what he can't get, the biggest problem here in our area is finding someone to do respite care in your home.....it's not the matter of getting the services it's finding the people who want to do it......this is a big problem not only for my family but for many others here, I do get paid to be his PCA, after he turned 18 he was able thru Attendant Services with Alpha One to hire anyone he wanted to come into our home and care for him thru a Waiver Program for people with disabilities to be able to stay in their own home and not go into a nursing home, even though he is 24/7 care he is only alloted 50 hrs. a week for paid caregiving services. There are some other state programs here in Maine, besides the program he gualified for......I have heard of so many stories from other disabled thru knowing them myself, reading things in Quest magazines......not so realiable PCA'sCNA's not showing up at the person's home, and one friend while she was a work the CNA for her daughter walked out of their home and left the daughter by herself and didn't call the mom to tell her she was quitting working for them, now if you move down state here in Maine towards the bigger cities there are more services available and more eager people willing to apply for these jobs......there are differences too between adult services and children services and like I mentioned these differ between states. Thank you for your concern and suggestions,
Cheryl
Hi Mindy,
I've thought of the idea of a commune or compound where we could live close to extended family, but everyone could still have some level of independence...older son's included. You're close enough that when there's a crunch time..."Dial a Ride" transportation is late; only appointment available overlaps with work conflict, shower time...someone is close enough to step in for an hour when you need more hands. Or, when you can get an 8:00 am hair cut on Saturday and you don't have to get the guys out of bed or ready to leave the house before you can go. It works both ways, too. If Grandma can play board games with the guys, but doesn't have to do any lifting while you are gone for a short while;Grandma is really helping and the guys love board games.

Making everyone as self-sufficient feeling as possible, but having back-up just seconds away is SUCH a stress reliever. We had the opportunity to restore a barn and make 3 master bedroom areas with a common living room/dining room/kitchen. I have my own space upstairs. We installed an intercom system, so whoever is "on duty" has the intercom turned on. My daughter in law is a nurse working part time and when she's at the hospital, I'm downstairs for the day: in the common areas, cooking, shared laundry or helping my sons with something in their rooms.

It works well for us. No one worries that a health aide will be late, because there's someone there in the meantime. Short trips, appointments or meetings are scheduled around the work schedule as much as possible. We just have to remember to look at that schedule if the appointment takes 2 of us: like the dentist or equipment appointments.

It's a trade-off for everyone, but knowing you can say, "I need to pick up a prescription" and not have to worry about loading up everyone is wonderful. It works both ways!

My original idea was 2 houses next to each other with an accessible breezeway (covered!) connecting the two houses. Actually, this has been working our better than we imagined.

I'd like to hear other thoughts, too.
Laurie

Interested in how we put our accessible barn together? Take a look. http://springmeadowcorners.blogspot.com/
Laurie,
Oh my gosh - your barn is beautiful. Can we all just come and live with you guys?

Can I ask who all you have living there? Looks like there are children there as well? Do you find that you ever want to scream at each other? How old are your sons?

Thanks so much for the information,
Mindy
Hi Mindy,
Our plan is for friends to be able to visit and use the barn as "headquarters" to use while exploring the East. You never know!!

My sons are 30 & 33. My younger son has been with Kattrina for 10 years; she finished school and now is a SICU nurse. The little ones are 6 and 4; Kattrina's nieces. They also live on the farm, but in a barn house across the street. Her parents live in the original farm house across the street. We're close enough to help, cook, celebrate together, but we all have our own spaces.

We do scream from time to time, but we designed the barn with 3 master bedrooms. Makes room for equipment, computers, stereo/TV's, bathrooms and a door that closes! LOL. When there's no snow, the guys can drive all over and explore. We've just moved into the barn in November, so we've had a toasty, spacious winter. (The 4 of us lived in a little 900 sq' house while we were building. THAT was a test!

We've pretty well recovered by now!

Laurie

Mindy said:
Laurie,
Oh my gosh - your barn is beautiful. Can we all just come and live with you guys?

Can I ask who all you have living there? Looks like there are children there as well? Do you find that you ever want to scream at each other? How old are your sons?

Thanks so much for the information,
Mindy
Hi Cheryl,
We've had our ups & downs with in home health aides, too. I've been a teacher, so I knew I could check with the Placement Center on nearby College Campus to look for students who wanted a part time job to: do homework, take my son on walking "field trips" in the neighborhood (to stores, to McD's, to the park, to watch soccer game at the park...). Some were nursing or recreation majors, some weren't.

Part of it was that I had to get used to the idea, get to know the student and feel comfortable letting someone take my son. I had to get to know them before I'd let them drive my van somewhere or go as an attendant on the local accessible van to the movies, etc. This gave me 1-3 hours of down time. I NEVER did housework when he was gone. I did something I COULDN'T do when he was home or awake: read, bubblebath, but I stayed home. I didn't have them do any personal care at this point. I observed HOW they interacted with my son, and listened while I was in the other room "on my computer". I wanted my son to be safe, but I wanted this to be something social, too. I wanted him to interact with someone other than MOM all the time. I invited the person to go with us to the movies or dinner or even on a short trip so I had back up...and could go for a walk by myself if I wanted to. I had to feel confident in the person; was that overprotective? I really don't think so. My aunt did the same thing for about 10 years with my cousin who also had DMD. They drove to the University together, sometimes taking the same classes.

Sometimes I was transportation for an evening class. The funniest experience was when I offered free room to a student who was going to Magician's school. That was a fun 3 months; entertaining, but not much caregiving...that was OK, tho. I felt more refreshed and we all laughed a lot.

After a surgery, I WAS looking for caregiving. It kind of depended on where we were at the time. My sister and in-laws were relatively close, but they couldn't help because "it 'hurt' too much to be around my sons. I still get livid about that!!! They never became a part of our support system.

Hope some of these ideas might help,
Laurie


Cheryl Markey said:
He has been getting SSI since he was in elementary school, every state is different on some things, he qualified for respite care before he was 18, it was hard trying to find someone to come and do it, have been down all the roads re; what he can get and what he can't get, the biggest problem here in our area is finding someone to do respite care in your home.....it's not the matter of getting the services it's finding the people who want to do it......this is a big problem not only for my family but for many others here, I do get paid to be his PCA, after he turned 18 he was able thru Attendant Services with Alpha One to hire anyone he wanted to come into our home and care for him thru a Waiver Program for people with disabilities to be able to stay in their own home and not go into a nursing home, even though he is 24/7 care he is only alloted 50 hrs. a week for paid caregiving services. There are some other state programs here in Maine, besides the program he gualified for......I have heard of so many stories from other disabled thru knowing them myself, reading things in Quest magazines......not so realiable PCA'sCNA's not showing up at the person's home, and one friend while she was a work the CNA for her daughter walked out of their home and left the daughter by herself and didn't call the mom to tell her she was quitting working for them, now if you move down state here in Maine towards the bigger cities there are more services available and more eager people willing to apply for these jobs......there are differences too between adult services and children services and like I mentioned these differ between states. Thank you for your concern and suggestions,
Cheryl
Hello, Laurie
Thanks for replying back! No, you weren't being over protective!
With being remarried now, with my husband helping, I get some breaks!
Also, this last summer we became friends ( real good friends ) with another family who have 2 healthy adult children, their 19 yr. old son has become real good friends with Adam. Adam can get into their home, the bathroom we can manage to get him in there, he has stayed there a couple of times and hung out with their son and her Papa as he lives with them after her mother passed away with cancer. They have been very good for Adam, they just automatically new how to deal with taking his jacket off or on, helping him with his drink ( needs a straw ), they cut up his meat for him at meals ( so, I don't always have to be seating right there besides him ( let's just say they have common sense about these things ).
I can still take off and head over to Wal-Mart or the Mall for abit, or run other errands, as Adam has a cell phone and just calls me if he needs me in a hurry ( we are within a few miles of everything, we where we live ).
I think my family is like the in-laws you mentioned didn't join into the support circle your son needs, because it hurt to see them. I have been to counseling and the first thing they have always asked me right up, is do your family help or support you.....and the answer is no. My ex in-laws live down the street from us, and have always been here for us. My parents live not far from us either as I mentioned Adam can get to their house in his chair.
I get some breaks! I really don't feel sorry for my parents not being able to handle it, I understand everyone deals with things in their lives differently, and the same goes for my ex husband who up and left us, everyone kept saying maybe he couldn't handle it......I don't care, Adam has to handle it and I have to handle it.....you have to look beyond your nose and think of the person who has to live with any type of terminal illness and be the adult and not be selfish and only think of yourself, selfishness has to come into the picture and think of the other person espically if you say you love them and be there for them......working in many homes of elderly and also in nursing homes.....I have seen too many lonely people that gave so much for their families ( their children growing up ) and they can't even go visit their parents saying they hate nursing homes or hospitals....well, do you think hey like them any better than you do. But, I can tell you one thing it isn't the person that always went and visited their aging parents that want this and that when they pass away, it is pretty much the one that never went to visit that turn into vultures and want everything, because they are wrapped up in material things in life to make them happy and not the memories they embedded in their minds and their hearts of their parents. Have seen this way too many times, someone will come to visit when the parents are on their death bed and say I am their son or daughter and you never seen them visit not once! It's v ery sad that there are people out there who are really this way. Thank God for caregivers, people who do really care!
I talk to God daily, I just don't pary to him, I talk with him, not at him but, to him! I thnk him everyday for instilling his trust in me to care for one of his special angels......"children in wheelchairs" He trusted me, as he knew I would care for him!

Cheryl

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