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By Lynnie On 2010.05.03 14:59
My husband was diagnosed with PD about 3 years ago at age 59. We lived in the country with a huge yard which took him about 4 hours to cut on a riding lawnmower. Also we had lots of bushes and weeds to control, plus so many things needed to be done or replaced such as the sidewalk, etc. We also had a large old two story farmhouse with only one bathroom on the main floor. The house was in good shape, but somethings such as wallpapering and painted would need replacing, and other things in the future. My husband doesn't have the same strength to do things.
His worse symptoms with PD is lack of energy or continual tiredness. We got the opportunity to build a townhouse, with everything on the main floor including the washer and dryer, plus a full basement which we could also finished, so we decided to sell and build this winter. It was quite a journey, selling and building as we've never done anything like it before. Now we are just about settled in and adjusting slowly.
It was bitter sweet for my husband since he never lived anywhere else except on the farm. I lived in town before we were married, so more used to it, but it's taken some time to adjust too.
We thought we'd make the moved now rather than 10 years from now, when he might possibly become weeker and not able to cope with things. Everyone agreed that we made the right move and wished they could do the same.

Also we can ride our bicycles on pavement instead of on a gravel road and I can walk anywhere in town without worrying about cars or truck speeding by on the gravel road. Also everything is so close when we want something at the store.
We are still going to our own church since it's only 10 minutes from our new place, so we haven't lost connection there.
We are making new acquaintances with the neighbors and another townhouse might be going up sometime too. Most of the neighors are around our age or a little older, so it makes a difference.
I would like to hear from anyone else that might have made the move too and their experiences.

By mylove On 2010.05.03 15:37
We did it.

I won't say we downsized (because the little rental house we were in before was a lot smaller and terribly laid out) but we did get into a more appropriate home. I think it was the best thing we ever did.

When we first began looking, we looked at some two story houses, and I think I frustrated my family and the real estate agent by vetoing quite a few nice homes that weren't what I would call 'user friendly'. I had a list of things that I wanted in a home, and we didn't stop till we found one. This house is in a nice neighborhood, single story, two full baths, and best of all - the floor plan is very open and roomy, with lots of passing space. No one understood why I had insisted on the roomy floor plan until our daughter had surgery in the fall and had to get around in the house with a wheelchair and crutches. Thanks to that, we now have built a ramp in the garage into the house, which we're all finding useful (not the least the overweight dachschund, who has a bad back).

Like you, we aren't to the 'disabled' stage, but we are to the point where I wanted to make sure that our 'forever home' was truly one we could stay in when we both got older and less able to get around easily. This house is new, so it hopefully will not have a lot of repairs for a while yet, and we are making all of the large improvements now while we can (enclosed sunroom, shaded deck). The only thing that may have to be done sometime is some access improvements in the master bathroom, which is absolutely huge and a blessing indeed.

I think you are very smart to think things through now while you can, and to make the change while both of you are still relatively resilient to change. It's definitely harder later. It's bittersweet, for sure. I know my husband still misses the large acreage and country home he worked so hard to build from scratch, but he has a big yard to mow and putter in now and I think he loves our home as much as I do. (He'll probably weigh in on the matter later too, so you can hear his opinion!) I do like town better; it's five minutes to the hospital or the doctor's office, as well as close to shopping, versus the half hour of before, and that has become very important to me.

I think you make your house your home wherever you go, and you may as well seek out one that works for you instead of against you if you have the chance. I wouldn't go back for the world. The wise person thinks about tomorrow, while enjoying today.

By Emma On 2010.05.03 17:32
We too made a move after my husband was diagnosed. At the time we were living in a house that we had designed and custom built 2 years earlier. It was out in the country with wooded acreage and a large landscaped yard. It was beautiful, we loved it and planned to live there forever. Then my husband got the PD diagnosis and, two months later, had surgery for spinal stenosis. I had to take 3 months off work to stay home and take care of him as he recovered from the surgery. I realized then that I was getting a glimpse of the future and that I would not be able to manage the caregiving that was going to come as the PD progressed, plus work, plus take care of that property. So with great sadness we sold our house and moved to a condo. We were lucky because we found a development with a lot of green space and built on a small lake. We bought a unit that was framed in but not finished so we were able to customize it. We did have all of the doorways widened and we put in a large walk-in shower with a built-in seat and handheld shower head. Everything we need is on one floor so it's worked out well. In retrospect it was the best thing we ever did. When I hear that lawnmower going and I'm not the one pushing it I realize that this was a good move. Something that I hadn't counted on was how great it is to have neighbors. Most of the people here are our age or older and they are wonderful. It's very much a little community. My husband has a great group of guys here. They play poker twice a month, which my hubby really can't do anymore because of the dementia, but they still include him and help him play his hands. They also give him his medications at 9:00 sharp! The guys in the complex also all go out for breakfast once a month. Our immediate neighbor always gives my husband a ride. We also have a little park area here that has a fire pit and gazebo and the people who live here frequently have "happy hour" and/or hot dog roasts there, which my husband loves. Unfortunately that area is down a little hill and I've been worried that my husband can't walk down there anymore. But, lo and behold, the guys thought of that and are working on making some kind of contraption to get him up and down the hill. I am so grateful that we ended up here. If we were still in our house we would have that beautiful property but we would be alone out in the country. Here my husband has a social life and help is nearby in case of an emergency. One day he decided to go for a walk by himself while I was in the shower. He fell in our yard but one of the neighbors saw him and ran over and got him up and back in the house. What a blessing! If we were both healthy I probably wouldn't choose this but for where we are now in our lives it's perfect. I'm very glad that we made the move and I'm glad that we made it willingly when we did before we were forced to. Even though I have since retired I know that I wouldn't have been able to keep up with that house and property with the level of caregiving that I am now doing. This works for us.

By karolinakitty On 2010.05.04 09:22
Hi Lynnie .... We too aren't at the "disabled" stage but when we were searching for a house here on the Lake, while we had no clear diagnosis at the time, We looked for a place that was as flat as possible roomy floor plan and all the above. We had thought originally that he was regressing from the brain trauma. The symptoms are similiar as PD(without tremors), so when searching for our dream home we had a list of things that would help us if indeed he was regressing. Even though this is a double wide it has lots of room for a wheelchair, we recently added the handicap ramps and originally had put a ramp at his shop so we are just about all set. I love to do the outside work, so mowing and landscaping have always belonged to me, and even when the caregiver role takes over more, i can still care for the grounds, or there are so many guys who do weekenders and part timers grass and trimming, i could get anyone to cut it cheap. It's three bedrooms but i have converted one to a "commercial" food storage area. Living this far away from town, may be our only drawback. over an hour from neuros, but only 20minutes from pcp...... It's what we chose though...we wanted to be as far from traffic and city noises as we could.

By Lynnie On 2010.05.05 08:19
Thanks for your replies and to know there are other people like us out there.
I forgot to say that when we customized the townhouse, we widened the door to 36 inches and made the upstairs bathroom larger so if we ever need a wheelchair, it would be large enough. We also put in a shower with a sit, but we don't have a removeable shower head, however, it could be changed if needed.
We don't have grass yet as they are still finishing the outside, but we are having a shed built for the small lawn mower.
We also have a fifth wheel trailer and this year we are renting a seasonal spot about an hour from our place. We used to go here and there with the trailer and even took it down to Florida several times, but the last time was too much for my husband. While driving through the mountains his right leg started to tremor badly
so he decided that we aren't taking it down there anymore. I hauled the 35 foot trailer for a little while and got into contruction with barracades on either side adn no shoulder, so that was quite stressful. I don't mind the road with less traffic, but the traffic is getting heavier every year.
Anyway, to get back to the house. We are getting more used to living here and when the blinds are installed and the outside finished it will be even better.
We had a garage sale last weekend and met some more neighbors, so each day changes. We do have a cat though and he has had to get used to the change too, which is difficult for a cat. He was an indoor and outdoor cat in the country but since moving, he was afraid to go outside. He is gradually getting used to it, but I don't know what he's do at the trailer. We used to get a neighbor to put him outside during the day and in at night, but that won't work here. Anyway, if it doesn't work, we might have to put him up for adoption, which will be difficult for me as I've always had a cat.
We don't know what the future will bring, but I think we made the right move and each day we will enjoy it better I hope. Our neighbor said it took them about a year to get used to the change, so we'll just give it more time.

Take care everyone and if you ever have to move and are building, I have lots of advice, if you need some. I organized each room in a binder while we were building and picking out things and took progress pictures of the townhouse.
I did find I did most of the calling on the phone for whatever we needed to do. My husband is more stressed when talking to people on the phone, etc., so I am glad I was able to take over and it has made me stronger. We made all of the decisions together when picking out things, and that worked out.

By susger8 On 2010.05.06 08:07
My dad decided on his own to downsize. After my mother died, the house was too big for him to take care of, so he sold it and bought a 2-bedroom condo. He had the forethought to get one on the ground floor. Good points: Half a mile from grocery store, bank, drugstore; two full baths; decent size rooms and closets. Bad points: There are two spots where the sidewalk goes down a step, and the space is awkward to fit in a ramp. Since it's a condo, only a temporary ramp that is removeable can be used outdoors. The doorways are not generous and he can't get a full-size wheelchair into the bathroom. (Our travel wheelchair fits, though.)

On the whole, it was a good move. The profit from selling the house lasted for almost 3 years of paying a live-in health aide.


By caregivermary On 2010.05.06 14:54
I think you made a very good move and as things progress, that will be reinforced.

My husb is not very happy with our downsize move but it really was the best thing for both of us.

By Lynnie On 2010.05.06 21:51
Well it was bitter sweet for my husband and he still misses the farm although he hasn't farmed for over 10 years. He had a full time job besides farming and retired at a young age from that job. He has lived at the farm all of his life and we wouldn't have moved if he was healthy and could still do things around the yards, etc.
Fortunately we did a lot of travelling with our trailer after he retired. He wants to go to Hawaii someday, but I don't know if he could take it. It's take 10 hours on the plane and then touring when we get there, however, if we went on our own, we could go at our own pace, rather than with a group. We should go soon before we get older and we don't know what the future will bring either.
Take care and thanks for your thoughts.

By parkinit On 2010.05.07 14:54
I wish I could talk my husband into downsizing. We have a pool, large yard, and a two-story home. It exhausts me trying to pick up the slack as much as possible. Especially since my spouse is fanatical about the lawn being "perfect."

We've only been married 5 years, and I agreed to move into his home (after much pleading and trying to convince him that we both needed to sell our homes and move into a new and different one) because he said moving into a new home would be devastating for him. I was also advised that PDers like things to stay the same, so I agreed. This home is such a burden, though. We had remodeled an upstairs bed and bath to be ADA compliant for him, but now, with him needing a wheelchair, we need to remodel one of the downstairs rooms and bathrooms to be ADA compliant (plus add a shower in the 1/2 bath). I just think it would be less costly (and exhausting) all the way around to downsize, but I cannot convince him of this. It sounds like for the rest of you, this was a wonderful joint decision. I envy that.

By Lynnie On 2010.05.09 13:02
Hi Parknit,
I am sorry that your husband doesn't want to move, but I can understand his thoughts and emotions. I never thought my husband would ever want to leave the farm as he has lived there all of this life. He is very caring and even though he is in the early stages of PD, he thought it would be easier to do it now rather than later when he was possibly worse (who knows the future). He was also thinking that is would be easier on me, if something happened to him and I had it all to do myself.
We had such a large lawn (2 acres) and bushes. trees and shrubs, etc. and he had a workshop full of things, and stuff in other barns, so it was easier, (although still hard), to move now.
We were so excited about building a new place and picking out things, but it was a lot harder when we actually made the move, however, we are adjusting more and more each day. It just take time and we'll be okay.
You would think since your husband needs a wheelchair, he would want an more wheelchair accessible place. In our new place we had the doors made to 36 inches and the bathroom made larger, so if we ever need a walker or wheelchair, we would be that far ahead. If it ever came to that point, we'd still have to make a ramp, etc., but there wasn't any point in doing that yet. He gets around okay now.
I've never heard that PDers like things to stay the same. I guess we all get used to certain things, but Parkinson's should affect you that way.
Your husband doesn't realize what caregivers go through and having a smaller house would be easier on both of you. I was wondering if you could join a support group and maybe other PDer's could talk to him and make it clear that downsizing would be more advantageous.
Does he have any children that could talk to him about this? Our daugher wanted us to move to the area where she lived, but it was like 6 hours away. We were considering it, but glad we didn't move that far away. She just wanted to be near to help us in the future. We actually moved about 10 minutes from our home, so we still have our friends around and go to the same church.
I'll be thinking of you and hopefully you can still convince him to move sometime in the future. Tell him about us and what we did, if you think it will help.


By parkinit On 2010.05.09 18:27
Thanks for the encouragement, Lynnie.

I dare not touch this subject with a ten foot pole right now. Yesterday he was lamenting about "everything I've had to give up" and started ticking off the items to make life easier. I've pushed, encouraged, yes, these areas becuase it has been necessary, but he seems to put the blame on me for "doing this to him." He's recently sold a vacation home, given up sports tickets to a collegiate team he likes to follow, but that are a considerable drive away, and no longer is allowed to drive. I think he believes these are all things "I've taken away from him." We've had to hire out for lawn help, and I guess as long as we are able to afford this, we can continue to go this route.

By Emma On 2010.05.10 07:21
parkinit, not that it's much help or comfort but it's pretty typical for the patient to blame the caregiver for things they have to give up, and to make us the enemy. Hang in there.

By Lynnie On 2010.05.11 13:31
Hi Parknit,
I am sorry that your husband feels that way. It is hard on you. Are you able to talk to a friend or go to a support group? I started going to one by myself and then my husband went for a few times, but he doesn't wantto go anymore.
He says it makes him feel worse to see the others. I don't really want to go again without him as I feel it's more for him and me. There are caregiver too, but most come in pairs, so I kind of feel alone if I go by myself.
I am glad for this forum so we can pick a topic and discuss things with people that are going through the same thing. website with includes support groups for PD, diabetes, cancer and numerous group. They have discussions and you can even have friends whom you can send messages to. They don't know who you are as you don't use your own name. Look up

By dkleinert On 2010.05.12 22:42
After reading all of your posts, I am wondering what to do with my PD husband's revelation that he wants to move home to Texas. We recently spent a week there and visited family. He spent time with his best friends since childhood - 4 other guys who are all in good health - and around his age mid-late 60's. He is a died in the wool Texan, and after the 20 years we have lived on the East Coast, now he wants to move home to be near his friends. Because of his PD, there is no way he will be able to help me at all pack, ready the house and acreage we are in, and in general do anything to help with this move he talks about every day. At first I thought is would pass, but he talks about it daily now. When I came home one night last week from work he had printed out about a dozen house listings that some real estate agent sent to him. He was so excited about them - the problem was that the price was far above what we could afford.....he was so disappointed when I mentioned the price. He said - he was just so excited to be actually seeing home in Texas where he wants to move to that he didn't think about the price......and all of you understand that problem, huh? Again I felt like the bad person.....having to say we could not afford all those great homes he found.

About a year and a half ago I spent 6 months getting our property ready to sell to move into town (we live on 3 acres in the country) to a townhome much like what a couple of you have described, only to not be able to sell our house due to the bad economy. So I refinanced so we would not lose the home. Now I don't know what to do.......I don't think there is any way I can do all of this alone. I work two jobs and am his primary caregiver.....I feel soooo overwhelmed. I want him to be happy - and he has seemed in uplifted spirits so much lately since he decided we are moving home to Texas-he talks and talks about it......there is a real noticeable difference - no depression - he seems more engaged and connected with our life, being thoughtful of me (so unusual), sometimes even offering to help out with things he can help with.....I just don't know...... He is still ambilitory, but tires really easily and naps. He is on an exercise regime...

What are your thoughts?

I feel really conflicted these last few weeks.....I love Texas also, but it feels like such a huge undertaking to move 1500 miles away, find new doctors, service providers (I have found they don't have the same good services in TX as we have here in NC), just being connected to what we need for him .... I would need to find a job......come up with the money for the move - even if we did sell the property here, there would not be a bundle left over - enough for a downpayment there - but that is all......

By Pearly4 On 2010.05.13 06:05
My mother was determined to move "home" the whole time she was with us. Though we obviously weren't invited to go with her, it did involve many of the same issues. In the beginning it simply wasn't a possibility and she knew it, but as the dementia progressed she was less logical about it and simply WANTED it. It was so hard but we knew that she couldn't get the care we could give her and even if she could, it wouldn't be the HOME she remembered - we, and she, still desperately wanted to give it to her. Short version of a very long story, we finally suggested she talk to her doctors (she had 3), her caseworker, her day center workers and ask their advice. They agreed, it would be an impossible situation. At that point, we simply had to say no. We offered extended visits with family, summers, vacations, etc. They weren't what she wanted, of course. She combed the real estate ads, contacted friends and family to ask their assistance and finally got to the point of calling apartment managers here in town. It was an idea that never died until she died. And I still hate the fact that it was the one thing that she wanted that I could not give her - not without giving up my life and moving with her.

Bottom line -- my advice -- do what is right for YOU. Don't count on any help from your husband -- he may be willing but won't be able to assist you with much. And if you make the decision to remain where you are, maybe try the extended visits or vacations idea if possible. He's living in memory-land; you're dealing with reality. In times of stress, I'd like to go home too! But I know home isn't there anymore. Forgive yourself if you stay where you are! You'll hate that you couldn't give it to him, but you just can't do some things.

By karolinakitty On 2010.05.13 08:06
D ... so sorry you are having to add this battle to your list. I have to agree with Pearly that you have to do what is right for you.
Going through our move from KY to SC practically by myself... i know what a strain it can be physically and mentally. He wasn't diagnosed at that time but not able to lift heavy things and started tiring easy.
Pearly is right on about the dementia thing too. Even if he has the slightest hint of it, this will be, ever on his mind.
Don't feel quilty or put blame on yourself about this though, that is the last thing you need. You are the one with the hardest of burdens, keeping him happy and trying to be the best wife/caregiver in the world. Not that it would probably do much good, but have you tried laying it all out for him. Maybe on paper?
Hiring someone to move you or selling off all you have
gettin the property ready, once again, to make it sellable
trying to sell it
finding a job
finding a place there
finding doctors

all that stuff, anything you can think of to add a list of why and why not......

tough love .... no we can't move, i can't do all this by myself......
I'm afraid you will be the bad guy no matter what ... even if you move .. there is that chance.... all his friends will go away, as they seem to ... and Texas just won't be the same... then he'll be upset over that ..

He still seems rational enough though where a good conversation layed out by you might work....

I will be thinking 'bout you D ...

By Emma On 2010.05.13 09:47
I have to agree with Pearly and karolinakitty, you have to do what is right for you, meaning what is easiest for you. Buying and selling property, physically moving, finding a job, new doctors, etc. is way too much in this situation. Another point I agree on is that in all likelihood he would be disappointed if you did make the move. You've been gone a long time, home won't be the same now. All those friends who were happy to see him for a short visit probably aren't going to be around much if you move back. Unfortunately this is going to be a losing proposition for you whatever you do. If you go you will be stressed, exhausted, probably broke and dealing with the reality of a different "home" than the one you left all those years ago. If you stay you will forever be the villian. I'm so sorry that you have to deal with this on top of everything else. Just do what you need to do and don't beat yourself up about it. You are doing a great job for your husband but none of us can accommodate every whim and desire. Hang in there!

By susger8 On 2010.05.13 11:27
I forgot to mention a problem we found with my Dad having moved a few years ago. His memory is very bad these days and he doesn't remember moving. And he doesn't recognize his "new" home. He keeps trying to leave and go home. I normally don't try to talk him out of his odd ideas, but this causes him a lot of distress, so sometimes I try to explain that he moved, and I point out familiar items. Really, I shouldn't, because he doesn't believe me. It upsets me that he's upset about it. But there's not much I can do. His old house was pulled down, and there's now a big mansion there, so I can't even drive him over to see it.


By MJ-Camano On 2010.05.13 13:57
I so agree that we are the ones that think logically, and will do most of the work; we need to think of ourselves when it comes to moving. I look back at the last four years and see several mistakes that we made before my husband was diagnosed. We were ready to retire and enjoy our retirement at a relaxing place after 37 years in the same neighborhood. We bought a lot and were going to build a home - caused many arguements, he was no longer thinking logically and every suggestion I had put down. We finally sold the lot and bought a lovely home (much larger than we needed.) But I thought living on a golf course and finding new friends would snap him out of his funk. After the move I got shingles and was not able to work for 3 weeks. (This was the stress.)Long story, four years later; I have the total responsibility of the home, food, cleaning, finances, taking care of him. I need to figure out what to do next; but I know this is my decision, but I will be doing what is best for him.

After the move I got shingles and was not able to work for 3 weeks. (This was the stress.) Thus please, know your limitations and what is really best for you and your husband; maybe gently try to remind him about how wonderful the area you are in is - great doctors, friends, etc. Good luck.

By dkleinert On 2010.05.14 00:44
Pearly4, karolinakitty, Emma, susger8 and Mc-Camano - what would I do without all of you. THANK YOU so much for being there for me. Indeed, I will lay out a plan for him all the "bullet points" so she will see what needs to be done before we could even think of moving. I want so to be kind to him because he gets depressed so easily and gives up so easily. I agree with all of you......I just had to write it and read it. And you are so right - I many times forget that we are the logical thinkers and he just can't do it most of the time. My life is sooo like all of yours - and it does not take long for it to get to this stage - where we have ALL of the responsibilities of our home, food shopping and preparation for all meals, cleaning, laundry, finances, working, and most importantly the ever changing needs of time for another thing.

Thank you for blowing the clouds of confusion away! I LOVE all of mean sooooo much to me. I am sorry I have so little time to write and read here.....wish I was able every day.

Love and Hugs to ALL of you.

Donna in NC

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