Am I being realistic about working?

[Star]

My husband will probably be in a wheelchair soon. He was diagnosed in Nov/04. Everyday he seems to be doing less and less. My maternity leave is about to end and I am heartbroken about what to do. I'm not sure if we could live off my husband's disability (probably not). I plan to look for part-time employment, is this being realistic? I can see he is going to start needing my help to do things, like getting up and possibly dressing etc. We have a 9 month old too. I just don't see how I will be able to work, unless I get lots of help. I talked to our local home care people, and they said they would come 2-3 times a week to help with bathing and a little cooking if needed. Can we get more help than this. We live in BC.

My other question is how am I going to help my husband? He is 6'6' and 240 lbs. I am so scared about how I am going to move him etc. I know there are different equipment etc. Maybe our local home care would also teach me how to care for my husband?

Thanks for any input?
Star

 

[PALS Mike]

It's a tough call...

My wife (Andrea) took a 'Stress/Short Term Disability' Leave as of Jan 24th.
Our insurance company ($unL1fe ) has denied her twice! for the following reasons:

• I'm the one with ALS and she just wants to stay home to take care of me and our two boys.
  She's not taking any medication(s)
  She sounded 'pleasant' on the phone when appealling the 1st denial (no kidding!)

We did find out that UI has a 15 week 'Medical/Sickness Leave'.
To be entitled to maternity, parental or sickness benefits you must show that:

• your regular weekly earnings have been decreased by more than 40%; and
  you have accumulated 600 insured hours in the last 52 weeks or since your last claim.

The other benefit availible is...
Compassionate Care benefit
Compassionate care benefits may be paid up to a maximum of 6 weeks to a person who has to be absent from work to provide care or support to a gravely ill family member at risk of dying within 26 weeks. Unemployed persons on EI can also ask for this type of benefits.

 

[Mike27]

Hi Star, I don’t know enough about your details to give an intelligent answer but I have a little to offer:

http://www.alsbc.ca/

I think if you contact the society they can guide you through the quagmire of ministries and red tape.
They can also help with equipment and services.
Your husband is a big fella so you are going to have to get some equipment and learn how to properly move him. I’m 6’ 4” and about 220 lbs, so we have a bath lift and a few other things.

I’m not familiar with the BC health system, but I found this for you:

http://www.healthservices.gov.bc.ca/hcc/index.html

I hope things work out for you, let us know!

Mike

 

[mannco74]

you can get help

als bc will have a stores of goods to assist. your husbands disability insurance and aids to daily living will help. what ever you buy, donate back to alsbc for tax credit. talk to your home care coordinator for home care as you will need more than three days. if refused apply again. all the best and we are all here for you. canada pension must also be contacted but we found them quite easy to deal with.

 

[Ontario caregiver]

This is very hard if you have a new baby, my husband is 6'2'' so I thought i could not help him but it is posible I do belt transfers and now because he is sicker I use the hoyle lift more, The very best advice is to take care of yourself first, you are needed as a caregiver to your husband and even more so a caregiver to your new baby. Always accept help do not be like me a think you are a superwomen because you will be too tired to help anyone. Your caseworker will help you best with any questions or concerns, and your als society will also be your best friend.

Just to suggest, a hard call, If i had a small child and an ALS husband and if my job was not there to turn to I would go on welfare, as you need the time at home, plus the more people who use other sources for help, this may wake up the government that 6 week or 15 weeks of unemployment insurance is NOT ENOUGH for our love ones. This again is a pride area but it is a long journey, and I worked 6 1/2 years under stress of als and now in the process of a compasion leave and then I will request a one year leave of no pay from work and will be living on my husbands disabilty ins.

All the best, and be sure to take care of yourself.


Ontario

 

[Ontario caregiver]

hello again

My time on the computor is limited, but I also failed to say I find it a honour to care for my husband. I have always said," Never say I wish I would have", when the journey of Als ends or even at the end of each day I want to add up the good check marks that I have contributed to make my husbands day be brighter, and now I even concentrate on how has my day been. Somedays there are a few clouds in my way but I try to find the goodness of each day.

What ever your decisions are, they will be correct, at the time, and there will be many changes as you continue your journey. When a stumble gets in my way I feel it is like a fork in the road, what ever you choose never look back, and say, I wish I would have, as I feel what ever direction I take on this road must be right at the time or I would have not have picked it .

Again all the best, and keep in touch as you will learn many things on this ALS site.


Ontario

 

[Star]

Thank-you for your replies. I know in my heart when I think about being able to stay home and care for my daughter and husband, it makes me feel good. The ALS Society has helped us already with some equipment, so I do know that they will be there. I guess I am just scared of the unkown. I need to do more research and that may help me feel better.

My heart goes out to all of you as well. This is such an awful thing for anybody to be going through.

Thanks for listening.
Star

 

[PALS Mike]

As long as you realize...

You are NOT alone.
We're all scared.

No challenge is without it's rewards.

 

[Carol Deboer]

Hey Star,

You will be alright. As Mike said, You are not alone. You really should look into Disability Pension for your hubby. That will help you out quite abit. Work insurance? Life insurance? Contact all of these sources, there will be help for you. It is not easy, I know, I have been there, done it. But, you will cope and you will do alright. I know it is overwhelming, with a new baby and all, but use all your resources, and use them now. Get help. Call your local CCAC. They are of huge help. If you need anything, let me know, I will be here for you.

Stay Strong.... Carol

 

[Patsy]

Hi Star;

My advice is to start planning now, in order to make things easier for later. Get stuff/equipment before you really need it because the process for getting these is usually long.

Get your Occupational Therapist to assess your husband and your home in order to determine what kind of aids/equipment what is best for your situation.

This is what I did when I first got diagnosed in 1998:

First I was put into contact with the Ontario ALS Society and the Muscular Dystrophy Association by the Sunnybrook ALS Clinic. I got the “Manual for people living with ALS “ for my CCAC and myself. They sent one to my family doctor and the “ALS Handbook; Resources for the ALS Healthcare Providers “. I had the ALS Handbook printed for my own staff working in my home. Both ALS Society and the M.D.A. sent various resources/handbooks on ALS and their regular newsletters. All of these are made readily available to my family, friends, professional and non-professional caregivers, in designated spot in the living room wall unit. You can download these manuals, resources and newsletters from the ALS Society of Canada website http://www.als.ca/, the American A.L.S.A. website http://www.alsa.org/ , the M.D.A. website http://www.mdausa.org/ , and the M.D.A. ALS Newsletter website http://www.mdausa.org/publications/als/ .

I can’t tell you how much this information has helped my family and I. Knowledge is power, especially when facing ALS! My home care team with the help of my ALS clinic, got everything rolling then. Getting ready early for the rapid changes that the ALS brings is imperative. I got information about various grants and tax exemptions/credits. I applied for my disability pension, right away. I also got our bank to honour the disability insurance on my personal loans and those that my husband I had made; that relieved some of financial burdens. Then I got a small monthly disability benefits from my Ontario Nurses Association/Union, every little bit helps. Fortunately, just last year, I also had a personal life insurance policy/pension plan through the Knights of Columbus, that I could cash out half of the amount, if my neurologist could complete the necessary form.

I have an excellent extended health care plan through my husband's insurance from his work. Know what you're covered for by your health insurance plan.

Patsy
.