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lisaann1170

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Jun 9, 2009
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106
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Loved one DX
Country
US
State
WI
City
Milwaukee
As the one and only child, I'm trying to help my parents decide where to live.

They just accepted an offer on their house (yeah!) so they'll no longer have to deal with stairs. But, now they need to decide where to move to.

The live in a small town 3 hours from me. I grew up there and they've lived there forever, so it's emotionally difficult for them to leave. The challenge is that I'm the only child and while I'm VERY willing to do all I can to help, I can't move back to my hometown where they live. I have a job, husband, four-year-old, and am adopting an infant within the next year.

I'd LOVE to have my parents move by me, but there are challenges with that move. (1) Purchasing a condo or renting is about 30% more expensive here. That's the biggest problem. (2) They're comfortable and happy in their hometown and it's sad to see this disease uproot them. (3) They've already found the perfect condo to purchase in their hometown. It will easily accommodate a wheelchair, they love the location, and it's a fabulous price.

The benefits of moving from their hometown to the city where I live are plentiful, but "practical." (1) There's a certified ALS clinic here, a VA hospital, and a local ALS branch with an equipment "loan closet." Huge, huge, huge plus. (2) I'd be nearby, so I can help them and I think seeing their grandkids would be therapeutic. (3) Mom has disability issues herself (arthritis and poor leg circulation) and I see her struggling simply pushing Dad's manual wheelchair. I fear she'll eventually need medical help herself.

Can one person take care of an ALS patient alone? My mom would practically be on her own in their hometown if they buy the condo they want. Both of my parents are in their mid- to late-60's and although they have retired siblings nearby, they won't be able to provide the care I'm able and willing to. On the other hand, my husband and MIL are also willing to chip in here. I married well. :)

I'm not sure what I'm asking, but I guess I'm wondering what kind of care I can expect my father to need. I realize each situation is different and this is a challenging question.

I think my secondary question is how can I convince my parents to move here or am I simply being too pushy?!?! I want them to be happy where they live and I know they'll love the condo they found in their hometown. However, they'll be on their own most of the time.

From a selfish point of view, I really, really want them near me so I can spend as much time with them as I can. And, I want the same for my son and future daughter.

Sorry this is so long. They want to make an offer on the hometown condo in the next day or two, and I'm working hard to curtail their decision!
 
Hi Lisa,

Welcome to the site.

The biggest question I have is this: Are your parents challenged at all ? Not stupid, but Alzheimers, etc.

If they have full use of their faculties , and are not in any physical danger, then I have to say:

Its their quality of life from their viewpoint that matters. If they are happier in the small town , then so be it. Have they ever been city people ?

All you can do is put the options on the table and let them choose.

You mention that you have an ALS branch near you. Have you submitted your Dads name there ? If you get them into the system , then that is a bigger help than you might think.

I have a mother-in-law that is 78ish , she does not have ALS, but other issues. She is a stubborn old goat. Its her choice. She wont move either.

Sorry that I don't have any better news.

Glen
 
Hi, Lisa-

In your first sentence you say, "I'm trying to help my parents decide where to live."
In your last sentence you say, "They want to make an offer on a condo in the next day or two."
I think THEY have decided where they want to live- and you are "working hard to curtail that decision."

In between those sentences are lots of issues to deal with, and I know it can be overwhelming. You want to help them as much as you can; you want to take care of them. And, you think you know what is best for them!

I can hear your pain, the feelings of sorrow that your dad has to deal with this (as well as your mom), and maybe even panic that you won't be able to do enough if they aren't close by. As an only child, you are taking the total weight of responsibility on yourself.

It is quite obvious from all your posts that you are a loving & caring daughter, who wants to help & take care of both your parents. I'm sure they know that as well. And, I assume you have told them what you have written here.

So, maybe you need to accept their decision: this is what they want and what they think is best for them. Their world is already turned upside down with his diagnosed. Maybe they need the stability & comfort of staying in a place they know & feel rooted.

You can continue to help & care for them. You can help with the move. You can continue to advocate for them, as you have so far, thru the ALS association. You should also contact the MDA-ALS association, if you haven't already. Maybe arrangements can still be made for equipment from loan closets, even where they live.

The clinic where he attends should be able to help you when your parents need more help with caregiving
You can continue to visit on weekends- and, yes, grandkids are the best medicine!

Just know, that you will be able to handle whatever you have to do. Your strength comes thru in your posts!

I wish you well-
Mare
 
Hi Lisa. I totally understand the situation as I have gone through it with my children. Read through this thread to get a feeling for what we decided to do.

https://www.alsforums.com/forum/showthread.php?t=2372

Now that we have all (wife, family and kids) experienced life in a powerchair, a feeding tube and a trache and vent, it is totally different than what we were told. It is much easier. With all the equipment you get, like a lift, commode chairs, etc. it makes life easy. Knowing what I know now, which I never would have known if we did not move, we would have stayed where we were and not moved!
I am grateful to be close to our children and grandchildren but we would not have made this move as we don't have friends here and are very lonely. I would say let them stay in familiar surroundings.
Bless you for caring that much for them you are willing to disrupt your life to look after them, but from personal experience I have to say I think they will be better off right where they are. 3 hours away is not a big deal!
 
I would have to agree with the others...They will most likely be happier in their hometown.

Surely they have friends and neighbors in the community that will lend a helping hand if need be, since they've been there all their lives. You have no idea how depressed the "elderly" can become when their social contacts are cut off. My mother was in a rehabilitation facility for months. It was about 2 hours away from her group of friends. Only one came to see her the whole time she was there. I don't think it was a matter of not wanting to visit, but rather the distance was too far for them to travel safely. Mom was never so happy as to be back in her home and in touch with friends again.

Also, the stress of living with a grown child and their family can become emotionally draining. I know you care deeply for your parents, but I think they would feel a little stifled, you know, it may cramp their style to move in with your family. I've learned that through experience too.

With a baby on the way, I believe it would be a major undertaking. You would really be stretched thin. (IMHO)

Just be there for your parents when you can and don't feel like you must take all of this on your shoulders.

Good luck to your family. Congrats on the pending birth of your child.
 
My wife never looks over my shoulder and reads these posts, but she did see this one and read what CJ wrote and ran away in tears saying "where were all of you with this advice when we moved?" The advice we received was to move - it has turned out to be the wrong decision.

Let them stay where they are.
 
Gosh Joel! I'm so terribly sorry! Back when you were anticipating your move, I didn't have the experience that I now have.:cry:

My mom had a terrible car accident last year and ended up in the hospital, rehabilitation facility, then assisted living. She wanted to move back home, but had no transportation and didn't need to drive at that time. I then went over to her house daily to cook, clean and help her with bathing, etc... My husband and I found a car for her to purchase and now she is happy driving short distances to the doc and store.

(We tried to work out her staying with us, but that lasted about a week.)

I wish I could have given you my experience with my mom back then, but I had no idea at the time.

Please tell your wife I am thinking of her and am so sorry for her tears.
 
Thanks CJ.

It was the right decision at the time as we did not have the knowledge we do now. And we would never have gotten the knowledge if we had not moved.

But with what we now know, the move would not have been necessary. I wish the medical profession would quite lying to people about life on a vent. It is absolutely nothing like what they said!

I am lucky in that God has given me the grace to accept things and get on with my life. This has made it easier to accept ALS and a trache and vent, etc. By accepting it we have been able to pre-plan for what is coming and get into a wheelchair (etc) before disaster happened. I did not fight it which has made it easier for my wife.

But we do miss our home and friends.
 
Hi ! Lisa
I can relate to your dilemma. It is not possible for your mom alone to take care of your father at her age.
I am the only daughter though not the only child of my parents . My mom is suffering from ALS while i was living outside India. I took the difficult decision to move in with my parents with my children as my parents were in no position to move in with me or my brother . It was and is still, tough but I did nt see an option. It is very difficult but challenging to balance it out . Thankfully i have a very understanding husband and in laws . Taking care of ALS patient can be very overwelming and emotional so i would suggest whatever you may do for your parents , you must let your own life be as close to normal as possible. Our parents also want things to be that way for us and not see everything else come to a standstil around them. This time is common to all the loved ones around you and yourself. Once gone will not come back. There should be no regret tomorrow with the guilt of not being around when needed or having upset your own life with your children and husband to be with your parents. Its a tough call but do what you can live with . I am doing what i am doing till i can do . There might be some modification down the time . One thing is for sure we have all bonded together and spent more time together than ever before because of this illness.
In your case since they have to move anyways they might as well move to a small place near your home as this arrangement should hurt least to all. Life will go on as normally as possible in the current scenario. All of you can be there for each other and i guess your parents will also adjust eventually. Ther cannot be ideal solutions but this would possibly be the closest if at all any.
Take care and best of luck. And i believe we caretakers are the blessed ones to be granted with so much strength by the almighty. May god continue to shower his blessings on all of us to be able to be with our loved ones in these trying times.
Namita
 
Thanks all for your replies! I very much appreciate your thoughts. You've given me valuable perspectives.

As I talk more with my parents, I realize they're conflicted. My mother (who is and will be my dad's caretaker) wants to move closer to me so I can help them and so that she can visit me and the grandkids at will. She's wanted to move here for years, but now is thinking of staying in their hometown because she thinks it's what my dad wants. (Just to clarify, they're looking to purchase their own condominium, not live in my too-small house!) Dad says his primary motivation for staying in the city where they are now is not so much emotional, but financial. Housing prices are much less expensive where they are as compared to Milwaukee where I live. I hate that money is part of this. I'm calling the VA tomorrow regarding grants for accessible housing.

I should also add that I now handle all of their medical issues. Insurance companies, physicians, the ALS Association, and the VA call me rather than them. Frankly, they prefer I handle these issues and they've been direct and said that they don't feel capable of navigating the related financial/medical mazes. They've granted me power of attorney, so that's covered. It's challenging to do these things from a distance, but I'll manage if I need to.

The more I write and think, I realize it's my own selfishness that wants them to be here with me. They each have medical issues which frightens me. And, they've both said that they don't want to know what lies ahead for my father, so they've asked me to handle each situation as it arises. I'm happy to do this, but I fear that not understanding the direction Dad's illness may take is affecting their ability to make decisions. In the end, though, I fully respect that this is their choice and can support whatever they decide.

They've been asking me for the past five weeks where I would like them to live, and now that I finally told them, I wish I hadn't! It's simply complicated the matter.

I wish we could simply focus on managing health issues and spending time together rather than hashing out major and minor decisions. Frustrating.

Thanks again for the replies, and the acceptance of my "vents!"
 
Lisa , you are most welcome to vent any time you wish.

If you told them the truth then there are no bad feelings. It is what it is.

It sounds like the more you talk , the more the real picture is forming. Keep talking with them, and grant their wishes if at all possible.

The power is in the knowing. Now you know ;)

Glen
 
Best wishes to you as your parents make this decision. Your feelings are very well-warranted. It's overwhelming to think of caretaking for both parents when you yourself have young children to care for a life in another city. The distance may be a challeng down the road, no doubt as you are needed more. Nothing is permament and if down the road circumstances change, they can always make the move to be closer to you, if they decide to stay in their city for now.

Best wishes to you.
 
I differ with almost everyone on this thread. IMHO I think they should move near you and DOWNSIZE. We moved to FW from New Mexico to be near our two sons in our old age with its associated infirmities. We thought we had built our ultimate retirement home--it was big and had guest quarters (everybody comes thru NM en route to somewhere else--we had a lot of company).

We drastically downsized because of insurance, property tax, and utilities considerations. And, we don't have to have so big a house when we have the extended family visit--the overflow can stay with our sons and their families.

We are closer to first-rate medical facilities, shopping, and other services. It is lot more convenient in every way. And, we have made friends here--we have practice at making new friends. I'm retired Navy and have moved 23 times in my life--a move is nothing to me. It is to some people.
Wynn
 
Just my opinion... The truth as you told it for what you would like is important in making the decision. Would your mother be able to care for your father as this progresses? Will they just have to sell the new condo and all that entails to move again? Will friends there in the home town be able to provide respite for her? Do they have funds for paid caregivers?
I have a care group from mostly high school friends and I'm 60. If my husband didn't have that I'd be in big trouble.
If it were me I'd put more weight in what your mother feels she needs for support.
 
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