Home Care - middle-age pALS

[mich5]

Just wondering what some of the younger pALS/cALS are doing or thinking of doing regarding home care. Specifically the group of pALS in late 40's/early 50's. You know . . . about 10 years too early to retire and take care of their pALS but with parents in their 70's who are too old and sick themselves to offer help. Just wondering what options may be out there . . . I think some individuals have been able to work from home. I guess I'm hoping for an epiphany (sp?) regarding a solution that I have not yet thought of . . .

 

[jamiem]

I am also curious about how others deal with this. Many of us are at least 10-15 years to young to retire!

 

[rictak in IA]

I'm 42 and my wife(pals) is 38, I run my own construction/handyman service, so I have just had to be alot more picky about what jobs I take and what jobs to pass on. I try to stay less than 10 min. from home so I can get home in an emergency. We have, in the past, hired friends to come in and do light housekeeping, cooking, and just as company for Patty a few hours a day, hoping to find someone else soon. In our case though, my parents are close neighbors, and very helpful with everything eccept personal care. Thats what cell phones, and careful schedualing(sp?) are for. Daycare, and now thankfully school for the kiddies. That helps alot too. Best of luck, I know all situations are different, we've just found sonthing that works for us... So far.

 

[panguinjen]

Mich,
I had to retire... But I'm 57... There is a website called lotsahelpinghands that you may be able to use to cobble together home care using volunteers...I use it when I need to get away and for friends to text Rog on a regular basis. They also have a community option. My friends have gone shopping, done laundry, sat with Rog...

Jen

 

[ottawa girl]

Hi,

I am/was 7 yrs shy from retirement - and my parents are elderly (but healthy!) 92 year olds. I'm in early stages and staying at home while my husband works. I've applied for my disability pension - hopefully that will come along sooner than later. (much slower in Canada even with firm Dx. - but it's paid out retroactively from application date... eventually). Our main concern is the inevitable house move - we own a condo in a high rise - but we're on 2 floors and even with a chair lift, it will not be do-able long term. I'm sad about that, but we hope to buy a one level unit in this building if one becomes available. We love our Centretown location and neighbours. If not, we will consider renting out our unit while we temporarily re-locate to another more suitable rental apartment and in which case, my husband can return to our current home when the time comes.

Thankfully, I hail from a very large tough stock French Canadian family - so my siblings have stepped up and assured us that they are in for the long haul to lend a hand - a few of them have recently retired and have the time and energy. That being said, I am quite certain that my retirement savings will go towards my care (and alas not to climbing Mt Kilimanjaro). Inevitably, my self-employed husband will have to keep working longer than planned to ensure we do not exhaust our savings and to provide the means for us to hire private personal care workers as my needs dictate. Our son is pursuing his PhD - and we will not allow ALS to inhibit his studies in any way shape or form. Thankfully he is independent, but as a parent, you always want to subsidize your kids - but we will not be able to do as much as we had hoped. (even if he is quick to reject such help).

It's a scary prospect and our dreams are shattered, but on the whole I am optimistic that we will get through this one way or another. You know the saying... Best laid Plans... We can only plan so much ahead and I think some decisions will have to be made on the fly. I am a very lucky person - and my husband reminds me everyday that my job is to stay positive and his job is to safeguard my dignity. What more can I ask for?

 

[panguinjen]

Elaine,
That is so uplifting! Thanks for posting, needed that today!

Jen

 

[mich5]

Elaine -- wonderful post. Yes, the 'best laid plans' . . . the main option does seem to be 'find a way to pay for care'. Rictak, glad that is working for you now. Hope it continues as that seems very good for your wife. I do have a friend who cleans houses and had thought that her coming once a week may work for one day out of 5. I'm sure she would stay the day with me. But retiring for my husband is really just 'quitting' w no pension/benefits/money. I need to remember that I can only plan so much ahead. And, of course, we don't know if it's 4 months from now or 4 years! My 'lesson' with this disease is I need to give up control. But, I am continually surprised by options that are out there for 'us' of which I was unaware. I'll check into the lotsahelpinghands.

 

[vzandt]

Right now my husband stays home alone while I'm at work. My son works in our town and comes over for his lunch hour every day and visits and fixes my husband lunch. At the moment it works because I know my husband is being checked and was fine at one o'clock. I get home at five. If things get bad for my husband (or when be can stand the thought of it) my sister and her boyfriend.d have offered to come live with us. It would be a great help...the downside being always having people here...and having to support two more people. We will do what we have to do. I cant quit my job. I cant retire. I'm only 54. We dint have enough money to pay for daily help. We can let my sister help us and help her at the same time so that's the plan for now. And shes a lna so that's a plus..and her boyfriend would do anything my husband asked him to...maybe not right but he would try..seems like a win win.

 

[ottawa girl]

That's a good plan! What is an LNA?

 

[brooksea]

My husband was 46 when diagnosed. He had symptoms for years prior, but we never thought there was a real problem brewing - never ever thought about it! I was a stay at home mom, at that time. We took a big hit when he could no longer work. Went through a nightmare with his company re disability that drained our savings. We then accepted circumstances and dealt with them. After that, my husband chose to travel with or without me, until he could no longer (paid for by friends). We existed on SSDI and my husband's LTD from work. It was tough and we could not afford a caregiver. To be honest, I really don't know how I did it while also dealing with an adolescent!

If you have a great network of SINCERE friends, do the http://www.sharethecare.org/ thing.

I wish you luck! Keep a snese of humour!

 

[marypat]

Lna is a licensed nurse assistant. and tha twill be a great help. our dtr moved home but working with a 4 yr old and going to school she's not as much help as we hoped.we r still searching options. my family is not close and his family isnt comfortable helping. Our sons have new families so again not as much help as we hoped. We were always the ones helping.. as it progresses i have nursing friends we can turn to but worry about burning out friends help

 

[ottawa girl]

Mary Pat - I just read your blog of June 6. WOW - I don't think you have to worry about burning out your friends. Sounds to me that you have given much and you will receive much in return. Just let them help. I checked out the two web sites about care sharing - pretty neat too. Who new?

Must be fun to have a 4 year old around - they're so much fun at that age.

 

[KrisS]

I am 49 and my husband is 51. No where near able to retire. I have taken a sabbatical from my employer. They have been good enough to hold my position for me since the beginning of this year. I'm not sure how long they will continue to do so, they have hired a temp. to fill in for me for the time being. We now live on his disability income and our savings. We are also not in a position to be able to hire additional help (at least for now, I'm afraid eventually we may not have a choice.) I hope we do not have to sell our home to pay for his care. Yet another worry and unknown.

Would your employer consider letting you take a sabbatical? Maybe it could be an option.

 

[mich5]

I am always 'surprised' that although this disease puts each of us on a different path with the way it progresses, we all have the same concerns, hopes, fears, and . . . a connection. Marypat - I am worried that I will burn out our friends' help. But, we should probably just begin to accept the offers and trust in God to provide a way. We have thought of the sabbatical from work. That will probably work to get us over new developments and times of 'change' but we don't know how long a sabbatical from work may have to last and, of course, we'll eventually need money . . .

It's nice to hear how others are handling this situation. Perhaps it will help all of us put together a hodge podge of ideas to make something work.

Vzandt - the having a sister come live with you is a great win-win situation. Have thought of things like that briefly but it's hard to imagine having someone there all the time. I've read on here that some people have found individuals who will help with everyday tasks in exchange for a place to live. Would love to have an apt over the garage so we could send them home once my husband got home from work.

 

[Susan10]

we are looking at a livein - room and board - for a nursing student. we are 61 and 63.