It feels like we are wasting precious time

[RandiLynne]

How do you make it possible to quit working, so you can stay home with them before they lose all ability/mobility? I hate to think we are wasting the good days with me working and him home and all we’ll have left are the bad.

Posted this in caregivers thread, was suggested to put it out here.

 

[ShiftKicker]

*Only if you're looking for feedback from all members. It's perfectly fine to post in the CALS' section if you are just looking for a CALS' perspective.

 

[Nikki J]

It is so very individual. You have to think about your life after. If you stop work now even if you can financially afford it what happens after? If you want/ need to go back can you? Very dependent on your occupation and your age.

as he is a veteran you will have more resources than many members here. If memory serves there is a program where you can be paid as a caregiver ( not 100% sure on this and it may require him to be more disabled). Some states also have programs where family members can be paid. You could ask your clinic social worker about that

If you can take time now it is great. Being able to make memories now will warm your heart in the future

you really need to look at the benefits you have and will get and think realistically about what happens after. No PALS would want their partner to be left struggling. Worrying about that has weighed on some of our members

 

[RandiLynne]

My therapist told me I’m very good at finding solutions, so I need to make sure I don’t do something because I thinks it’s what’s good for him but in reality it’s to make myself feel better. I question if that is what I’m doing.

 

[Mary2]

Hi RandiLynne, myself I would treasure all the time I have with him now, but if I needed money I might keep working. I might consider dipping into savings for a yard man or housekeeper to lighten the domestic load so as to maximize time together. Some couples travel, others see relatives. We did little of this. We lived our usual life and spent time in the family room talking or at the dining room table enjoying each other's company. My husband was fairly independent and spent hours each day by himself reading, watching u tube videos and listening to audio books. He enjoyed this time to himself. Later my husband really needed me. He was on bi-pap and even with caregivers I drastically cut down the time I spent outside the house. Also later, the administrative tasks of managing MD appointments, and medications and supplies can be time consuming.

 

[Tomswife]

Precious time. Yes. Every time our grandson calls, Nana! Every time I make our granddaughter laugh. I wish i could freeze these memories. But I just say. Thank you Lord.
Since Tom's diagnosis I have told him I love him hundreds of times, and many times a day. Sometimes I rest my head on his warm chest. I want to make sure he knows he is my guy.

Tom and I were both retired when he got the ALS whack in the head. So, we did not have to wrestle with the balance of work and caregiving. Our financial resources are set, with no new income. And we are okay.

You dont have to figure this out on your own. I suggest you find a person who is very good at financial planning, a friend, family or a professional. They need to be someone who will work for you and think through these issues with you and PALS well being as the focus. The right person will help you figure out what can be done and how it will effect your future.

Even though I am home with my guy, he is listening to an audio book, sleeping or watching TV. So whatever time you can carve out to focus on your husband will be good for him and good for you.

Peace, kathy

 

[Mary2]

Yes, be sure to tell him you love him! Once an hour isn't too much! I didn't say it to my husband enough and I have regrets! Be sure and hold his hand as well. Touch is important. Also, take pictures because once the bi-pap goes on the pictures always have the bi-pap in them. So nice to see your husband's face without bi-pap!

 

[Nikki J]

Making yourself feel better is not a bad thing. Your needs and wants are valid. If you want something that is bad for him or he violently opposes then you need to work through that but it doesn’t sound like that is the case.
again figuring out if there are long term negative consequences for you is important but don’t discount wanting something you can afford because it helps you.

in a perfect world with infinite resources I think every PALS and CALS would want to spend their functional time together doing fun and meaningful things

 

[Tomswife]

Since some of your question is about finances:
- do you have benefits, medical or other, you will lose if you stop working?
- do you enjoy working and much of your self satisfaction comes from work?
- can your PALS be left home alone and if so for how long?
- who managed family finances in the past?
- do you have a family budget to guide you. If not you will need one due to ALS expenses. Our greatest expenses are paid health care providers. But I did delay hiring people until I knew I could not do it alone anymore.
- can you work part time or can you work from home ?
- are you prepared for all of the uncertainty this disease brings? You could make major changes to your life, but the future is uncertain. There is no predictable course and no predictable progression. There are just statistics about progression.
- have you been told he is slow or fast progressing? Most neurologists will not say this and ours did not. It was other CALS and PALS that surmized my PALS progression.

I am sorry you have to think through so many issues while you are also learning about ALS and caring for your PALS. This is a very tough journey. I hope you will find someone to discuss all of these choices with, and allow your husband to participate.

 

[KimT]

Do you work for a large company? Do you have vacation and sick pay? Family Medical Leave Act may come into play, even if you use it for your own "mental health break." If you can plan a trip while he is still able, I'd do it.

Does HR at your company know about your PALS? Do you have friends and family who can help with daily duties so the two of you have more time together. I don't know what type of work you do but I could have done mine remotely for as long as I was able.

I had a very easy job and, knowing now what I didn't know then, I would have taken one semester off and traveled, then gone back to work for a year. I was scared by a nurse at my clinic into thinking I only had a couple of years. Progression is hard to predict.

Even being a CPA and financial planner, I made some financial mistakes in the beginning but I was basing those decisions on unknown information and I was also taking care of my brother and a friend who had cardiac issues, plus working full time and completing my doctorate. Because I was living alone, going out on disability at age 60 seemed like the way to go.

Each case is so individual. And there's the emotional part that may interfere with making the best decision.

 

[lgelb]

FMLA can be used for the care of a family member, all in one shot or intermittently. Of course, if you are able to work some from home, that would probably be best for your relationship with your employer if you are trying to return later.

Depending on what you do and how it's done, after you've exhausted your FMLA, if applicable, it might also be possible to change your status to that of a part-time W2, or W9 contractor.

If possible (as in, they already know and you don't think they're about to fire you), I would discuss options with your manager and then HR, but come prepared with questions about how each scenario affects your current and future benefits, and don't commit yourself to any course of action on the fly. Don't accept guesses and ask for statements in writing if documents are not clear. The median life expectancy of a PALS from dx is 2-3y.

If they don't know and/or you are worried about being fired, I would verify your type of employment (e.g., at will, fixed contract, etc.) and potential grounds for dismissal before raising your husband's condition. It may have already come out based on claims, but there is no need to presume this if you are not sure.

 

[Doing My Best]

Hi RandiLynne, I'm so sorry you're in this boat with us. I wanted to respond to your question because in my experience, anything you can do to create memories together, especially if/while your PALS is able to function at a pretty high level, is precious and you'll never regret it.

My husband was diagnosed just as the pandemic hit, so his most able months were spent on lockdown, very frustrating. Our kids live far away and he couldn't even see them for months after his diagnosis. Eventually we rented a small RV and spent a whole month driving across country and back, visiting kids, friends, and family along the way, seeing gorgeous national parks, listening to audiobooks and fun music together - it was one of the best trips of our life. We stayed safe in our little bubble, no restaurants or hotels, had dinner with our friends in their back yards while sleeping in our RV in their driveway - and our kids quarantined for two weeks before we arrived so we could be together with them. Memorable, and totally exhausting for me - I did all 6,200 miles of driving, all the RV hookups, meal prep, packing and unpacking the RV, getting Steve dressed and fed - but I would do it over again in a heartbeat.

I had accumulated enough vacation time to be able to take the time, and then I went to part-time work when we got back. And then several months later I had to stop working to manage PALS' needs, which broke my heart as I was not ready to retire. I'm a little worried about the future financially since I had planned a few more years in the workforce, but I just decided in the grand scheme of things, having special time with my husband was top priority and I'll figure things out as I go.

I have nothing to add to the good financial advice everyone has given, but I just wanted to encourage you to find a way to maximize the time you can spend together, and special ways to spend it, if at all possible. For me I think it'll help me have fewer regrets.

 

[lgelb]

That sounds like an incredible trip, San Diego. I agree on all points. I'll just add that even if your finances or other commitments don't permit travel, travel is also in the mind and time at/close to home can make fine memories as well.

So, no time together can be "wasted" if the two of you are content with how you are spending it.There is no external yardstick that matters one iota compared to your own judgment and feelings at the time.

 

[KimT]

Speaking of finances, I had a PALS friend who had rapid progression bulbar onset ALS. She lived alone in a small apartment. She was young and had no resources after she left her job. Just SSDI which paid the rent with little left over. The Gleason Foundation found out about her and they flew her to see her favorite football team play. She only had to get money for food while she was there. Just wanted to put that down in case money is holding PALS/CALS back from their bucket lists. There are charitable organizations that do help. They come and go as donations come and go. Back when I was diagnosed, our local chapter of ALSA gave out $500 quarterly grants for medical equipment or assistive devices. Many of us got our bidets that way. There was also a group called Guardian Angels that gave out $1,500 grants.

 

[MJT]

MA and CA have paid FMLA. I'd check to see if your state offers that. Our ALSA chapter gives grants of up to $750 every 6 mos. They encouraged us to apply even if we didn't feel like we needed the money because the money would be lost the next year if they didn't award it. I'd echo what Nikki said and add that anything that brings you peace or joy will also benefit your husband.