Status
Not open for further replies.

13fishfan

New member
Joined
Dec 14, 2006
Messages
2
Reason
PALS
Country
US
State
nv
City
las vegas
My first posting. It has been very helpful for me to read your stories and have you let me into your lives.

My Father was diagnosed in the last year with ALS. :cry: This has been a huge blow to everyone in the family. He is my rock.

He lives alone as my mother passed away the year before with cancer. He has been using a walker but it sounds like he may be moving to a cart soon. Because of this recent loss, I have a sense of urgency to do what I can to help him now and not later. He is like many of the dads described in here. He does not want to burden anyone. When I recently asked him what his plans are for living arrangements in the near future, he said he would live in a retirement home with a medical facility attached or something so as not to put anyone out. I know he first choice is to live in his home. He is very independent. However, he concerned about being taken advantage of as time goes on by a professional caregiver. He is fortunate, he has money, so he has choices.

There is nothing my dad could ask me that I would not do for him. He will not ask me but it is clear this is his first choice.

I am seriously thinking of moving my family in with him. We would have to move (1000+ miles). Dealing with mom’s health this far away was tough on me and my wife/ kids. Not sure I could do that again.

I am worried about a lot of things but I guess I am more worried about my wife and kids. Both little ones are under 6 years.

Questions:confused:

If I move my family into his home, while he has a professional caregiver:

What will this environment be like for me? What am I signing up for?

Any spouses have any feedback?

What kind of stressors will this place on my mariage?

What are the pitfalls I should look out for?

What can I do to make this easier for my wife?

I have many questions, but I will wait to see what the response is on these questions. I know they are open-ended questions, but I have to start somewhere.

Thank you again for sharing your stories with us rookies. We can learn a lot by listening.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
First welcome to the forum and I hope you get some guidance that will help you decide what is best for all concerned.
I'm one of those fathers like yours who is very independent and don't want to be a burden on my children. I was just DX may 11, 2006, but had been having symptoms for 2 years leading up to the DX. I still have my wife to help me, but she has back problems that are causing us problems. She cannot lift me. I use a trapeze bar over the bed to get up and get into my motorized wheelchair, so far I have been able to take baths and go to the toilet by myself, but my arm strength is fading fast and soon I will need some kind of lift to move me, plus some serious renovations to the bathroom to make it more accessible. I also have lost lung capacity and have to breath on a BI-pap machine at night or when laying down.
I am in the process of trying to get home health care to come into my home and give me some direction on where to go from here.
I would prefer to stay in my own home as long as possible, but I know there may come a time when I have to go into an care center of some kind. I'm trying to put that off as long as possible.
I have trouble swallowing so soon I will have to have a feeding tube put into my stomach to receive nourishment thorough. These are just a few of the things to look forward to.
I have 15 grandchildren that visit me from time to time, and I love them more than I can say, but when you are getting weaker every day, little things began to get on your nerves. So I love for them to visit, but I'm glad when they leave also.
My greatest goal is to try to stay positive and live each day to the fullest I possibly can. To enjoy the little things I use to take for granted. Go see a movie, watch the water at the beach, etc.
I know I've rambled on about a lot, but just trying to give an overall view from my perspective. Also consider there is no definite time as to how long any of us will live with this disease. It may be 2 years or 8 years. Are you prepared to have your children grow up in this atmosphere? Each person who gets ALS reacts differently. Some do real well, some get grumpy, and some just get outright ugly. I hope the best for your Father and for you and your family as they face this decision.
I would recommend that you have a long talk with your family and make it a family decision before making the move. You will be changing everyone's life with this experience.

May God Bless and guide you in your decision,
Capt. AL
 

caregiver0204

Member
Joined
Jun 15, 2006
Messages
27
Reason
Loved one DX
Country
US
State
nv
City
carson
MTPOCKETS makes some great points. My husband has ALS and having people around is great but he tires so fast that he needs his quiet, Our grown children live about 4 hours away and I am grateful they are not living this everyday. We want them to visit often and pursue their happiness.
 

Pearl

Active member
Joined
Aug 20, 2006
Messages
77
Reason
Friend was DX
Country
US
State
Georgia
City
Atlanta
You really need to know how your wife feels about moving 1000 miles and moving in w/ her father-in-law. While noble, this could put a great deal of stress on your marriage. If my husband asked me to do this, I think I'd tell him to give it a whirl all on his own (he would be welcome to go live with dad, but I think I would stay where I was with the children). BUT everyone is different and so are their marriages.

How practical is it to move your dad closer to you?
 

terri

Distinguished member
Joined
Jul 7, 2005
Messages
126
Hi,

I'm my husbands caregiver and I'll tell you how I feel. In my opionion, to make a move like that it would have to be with 100 percent support of your wife. Again in my opinion, your first obligation is to your wife and kids. The care can become more than you and your wife can do and then your father may still need to go to a facility or have full time caregivers.

If I were you, I would read every ALS forum I could find and read some of the difficulities and ask yourself how you could handle the task and still be a full time husband and father.

As a wife and mother of two sons in their twenties, I think you are wonderful to even consider doing this. You must really be a special person. I don't think my boys would even consider doing this for either of us! If they did, I would love them and think the world of them for doing it. If they didn't, I would love them and think the world of them.
 

hope

Distinguished member
Joined
Oct 1, 2005
Messages
230
I do not know if this will help you or not but it helps me every moment of the day. Follow your heart. You can not go wrong when you believe in what your heart is saying. In our minds we can think of many things that would change our minds when living with a disease that hurts so much. We could say it would be to hard, it would be very stressful, it could make us totally exhausted day after day but at the end of the day one knows that when you love someone dearly it is okay to feel exhausted, it is okay to feel stressed, yes it is hard but think for one moment how hard it is on our loved one who is living with the disease. The tears they cry inside when we are not looking, the pain they may hide, I feel sometimes it is important to hear what they are saying when they are not saying it. For me I want to be there with my loved one to comfort, to hold when the tears flow, laugh when the laughter comes, feel all the emotions together so my loved one never feels alone. Follow your heart.

hope.
 

Jane

Distinguished member
Joined
Feb 7, 2004
Messages
168
Reason
Lost a loved one
Country
CA
State
ON
City
St Catharines
expectations

Hello, It is difficult to give expectations as ALS progresses differently in everyone. The one constant is the eventual need for a great deal of care, at some point full time care will be needed.
Giving that care is exhausting both physically, and emotionally. The care levels change and increase seemingly every day. Having said that I would not change a moment of the time I spent caring for my Sister. It was several months of long days and hard draining work. But it was a labor of love.
However it is important to have all family members on side with this decision. It will effect each person in the family. Fortunately my Husband is wonderful and supported me fully every step on the road.
If you decide to make the move be sure you are all completely aware what is really involved.
My prayers are with you and your family as you make this decision.
Jane
 

paula B

Active member
Joined
Jul 23, 2006
Messages
87
Reason
PALS
Country
US
State
wisconsin
City
seymour
Perhaps moving to the same town as your father would be an option for you that may be better for everyone involved. If your lived closer you could visit often and have your family life. Kids need to have there own home where they can run and play and not worry about noise. And also your father is going thru enough changes in his life that it may bother him to have 4 people move in with him. I know you want to be there for dad and that just shows how special you are,,but please be sure its what all involved want.
Good Luck with the choice you make.
Paula
 

emjoi

Active member
Joined
Jul 19, 2006
Messages
67
Reason
Lost a loved one
Country
Aus
State
Vic
City
Melbourne
paula B said:
Perhaps moving to the same town as your father would be an option for you that may be better for everyone involved. If your lived closer you could visit often and have your family life. Kids need to have there own home where they can run and play and not worry about noise. And also your father is going thru enough changes in his life that it may bother him to have 4 people move in with him. I know you want to be there for dad and that just shows how special you are,,but please be sure its what all involved want.
Good Luck with the choice you make.
Paula
That's not a bad idea.
As time goes by, it will be more and more like living in a mini hospital, and that can get exhausting and depressing for your family. And on the flip side, your father will need more and more quiet and peace.
And you will need a return to "normality" sometimes too. You don't want to burn out and get resentful of your task.

So if you can be near, and your family understands that sometimes you are sleeping over with dad, that would be better.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
This is a great thread! It touches upon issues we all will face at some point. The lines often blur and we have to weigh options and seek ground between independence and the need for care; offering love and support vs the need to maintain your own life; and so on.

Myself, I have a few years (I hope) before I need to figure this out but I change my mind weekly. Sometimes I don't want to be a burden and sometimes I want to live my last few months in comfort and with those I love.

When we considered taking in my Mom, I called an agency to see how often they would send caregivers and the director was quite blunt. He asked me why I wanted to devote 24 hours of my life every day of the year to full time personal care for another. He said if I was doing it out of guilt the situation would deteriorate quickly. And then in conversations with my family it became clear that people really did not know how much of a sacrifice they would be required to make. And my mother's sense of dignity is such that she was begging me not to let her family see or participate in certain aspects of her care. Some things you want a skilled person to do, I guess.

My thoughts are with you, your Dad and your family as you make this decision together!
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
follow your heart

HELLO ,13FISHFAN I know every decision may vary from person to person but i received so much joy when i was able to take care of my mother for 2 yrs with ca. My father died ca 1 yr. before she found out. she had vonreckinghausers disease also My 4 yr old & 9 yr old moved in to take care of her (and my husband). It was sometimes a bit confining but my mom was great I am soooo glad i took care of her I was so lost when she died I needed to find some one to look after soooo I bought a daycare haha. I now have ALS I hope my family will love me enough to take care of me like i did my mama and never have to feel guilty about being a burden. My mother never felt that because i didn't give her time. I also gave her space when i felt she needed it. also to me the worst ansiety now for me is not death but being a burden...:cry: follow your heart but as someone said consult your fam. on this matter.. iLL shut up now lol. sorry about incorrect typing in order to hurry. LOVE TO ALL JANF
 

13fishfan

New member
Joined
Dec 14, 2006
Messages
2
Reason
PALS
Country
US
State
nv
City
las vegas
Reply to all

You all bring up great points. Thank you for taking the time to way in.

One thing I mentioned that I think was lost in translation.

My dad will have professional care. It will be round the clock when it gets to that point.

So my role will not be as difficult as some of the ones described. Do not get me wrong, I know this will be tough. But there is a BIG difference between being the sole caregiver and being in the same house with professional care.

His home is large. Much too big for him by himself.

Again, thank you for sharing.
 
Status
Not open for further replies.
Top