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Lory

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Aug 27, 2013
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Loved one DX
Country
US
State
MD
City
Baltimore
Hi everyone. I have been lurking here for the last few months and have gotten so much information from reading everyone's posts. My father was diagnoses with limb-onset ALS in March. He has fasiculations in his legs but is still able to walk completely independently. He has limited use of of his arms. His voice and swallowing are good currently but he is wondering if it may be in the beginning stages of being impacted. :(

My parents live in ohio and I am in Maryland. I have invited them to come and live with me as his symptoms progress, if and when it gets to be difficult for my mom to care for him on her own, but they are adamant they want to stay in ohio. The house they're in is already handicap accessible, but I am just really worried about what will happen down the line. My mom will be basically be his full-time caregiver.

I would love to hear any opinions/stories from people who are able to have their loved one at home, when they are the primary caregiver. I just don't want my father to go in a nursing home, as he is only 67. :( I plan on flying out as much as I can to help, but am afraid my mom will be doing the 24/7 work. Is this even possible, or do most people have to go into a nursing facility when they become wheelchair-bound?

Thanks so much in advance!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
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State
FL
City
orlando
I think most people do stay at home until the end! Especially if they have a loving caregiver who has help. Your parents are ahead of the game if the house is accessible, and they have a loving daughter like you. your mom may need assistance as he gets farther along because it is overwhelming to deal with 24/7 care giving.

Do they have the funds to hire help as he progresses? or do they have other recourses they can turn to, like other kids, church or friends?

She may only need minimal help for some time, like with the house upkeep or transferring as he gets worse.

And, they don't' have to decide now if they are going to live with you--it could be when he progresses it may be to much for mom and they come to stay with you.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,527
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
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SMALL TOWN IN
We couldn't find anyone where we live to properly care for dad 24/7. I absolutely have to work to pay my bills and family insurance. Plus, my dad would never ever allow me to be his caregiver. Even before his illness he never would let me do anything for him. He thinks he has to take care of me even though I'm 47! Dad moved to Dallas where both my brother and sister live. He is now living in a assistant living facility. But, this one is more complex then most and has more hands on care 24 hrs a day and he gets minimal physical therapy. He has his own apartment and has stuff he wears to push if he needs help. My dad has limb onset and can walk a little with a walker and has a lift chair that pretty well puts him in a stand up position. But, he needs help being transferred to the bathroom, getting a shower, in to bed, etc. A hoyer lift wouldn't fit in his house. So, dad needs alot of lifting. My dad had a very strong man taking care of him for quite sometime and found the transferring extremely exhausting. Dad does also have a transfer chair, regular wheelchair, and a electric one. He can never walk with his walker without someone being directly behind him holding securely to his gait belt. We are going to try this facility for awhile to say how it works. The facility is beyond expensive that my dad is staying at. Thank Godness he is a veteran and they help with some of the cost. But, not nearly enough. If the place doesn't work out my brother is going to have parts of his house remodeled so dad can move in with them and they will get him full-time care. Your mother is definitely going to need some help from someone. Good luck to all of you. You sound like a very caring and loving daughter. Your parents are lucky to have you. Kim
 

Annie's Phil

Distinguished member
Joined
Nov 22, 2011
Messages
309
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
MD
City
Eastern Shore of Maryland
Yes, Lory, it is possible for the PALS to stay home. My wife was always home. I would have done whatever was necessary to keep her here. I realize this choice isn't realistic for everyone, but she and I were very thankful that we were able to do so.

The CALS should be prepared for the reality of how exhausting it is to care for a PALS long-term. But I think most CALS look back on it and are glad they carried the load, regardless of how exhausting it was at the time. My suspicion is that your mom would much rather endure the hardship of caring for him at home than have him in an institution. And if you are able to periodically visit them, your mother can get a bit of a respite from time-to-time. And when things get most demanding, hospice help will be available at home several times a week for such things as bathing.

My heart goes out to you and your parents.
 

Lory

Member
Joined
Aug 27, 2013
Messages
13
Reason
Loved one DX
Country
US
State
MD
City
Baltimore
I have 2 younger brothers but they both live out of state also. One of them also offered for my parents to come and live with them. They just really want to stay in ohio.

I just wonder if my mom is really prepared for the physical and mental stress being a 24/7 caregiver sounds like it is. I am an occupational therapist so I have a little knowledge about als, but not much.

They have enough money to afford someone coming in to help for a few hours a day if it comes to that. Right now they are fine without help. I just didn't know if a few hours a day is enough, once my dad becomes immobile in his upper and lower body.
 

Annie's Phil

Distinguished member
Joined
Nov 22, 2011
Messages
309
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
MD
City
Eastern Shore of Maryland
The rate of progression is highly variable, but typically it's a gradual decline. So your dad's need for assistance will gradually increase rather than have an abrupt transition. Both your mom (and any other cals helping out) and dad can adjust gradually as his needs increase. The workload on your mom will definitely increase, just not in one sudden, dramatic step. You learn as you go and get better as you adjust your techniques.

Outside assistance a few hours a day would be a huge help.
 

FirstMate

Member
Joined
Aug 1, 2013
Messages
16
Reason
Loved one DX
Diagnosis
09/2012
Country
US
State
MD
City
AA County
My husband has limb onset and he is now 100% dependent on me in less than a year. We have modified our home and just started having a paid caregiver come in twice a week so that I can get out and run errands or just have time for for myself.
 

rosec

Distinguished member
Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
Like others have said, yes, one can care for a PALS at home. We manage by paying someone to come 6 hours a day, seven days a week. We started with 4 hrs, 3 days a week about 2 1/2 years ago. I work fulltime, about 60/40 at the office and from home. Having someone in the mornings to take care of showering, breakfast and lunch, lets me work. Our kids, now both in their twenties, help on weekends and during breaks. Family and friends help by bringing food, doing groceries, etc. Supporting your mother during this time will be the best thing you will be doing for her and your father.
 

Lory

Member
Joined
Aug 27, 2013
Messages
13
Reason
Loved one DX
Country
US
State
MD
City
Baltimore
thanks so much for all the replies. It has really given me some peace of mind. :)
 
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