- Joined
- May 9, 2016
- Messages
- 1,529
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
Hi All,
Some will know that my husband passed in March this year, a few months short of three years from Dx. I’ve had about eight months to chew on how things went for us, and what worked and what did not. We are all individual, our situations unique but in the interests of maybe helping someone else I thought I’d post my thoughts.
1. Starting with the emotional side, all of your feelings are okay. Mad, sad, frustrated, heck even resentful as long as you don’t take it out on your PALS. If you happen to take it out on your PALS for a minute, to lose it a little apologize and move on. You are human, s/he’s human, and there are no demons or saints here, only humans trying to muddle through.
2. A bit more on the emotional side, grab your moments. You, and s/he live with ALS for often a long while before your PALS leaves this world. Enjoy the football game, enjoy holding hands or family or that great day on the deck. The moment is all any of us ever had.
3. On the financial side, if your PALS is game do the estate planning early and be done with it. If real estate is involved, make sure you get a real estate attorney involved, not just an estate attorney. Be very careful of the idea that you don’t need to worry about any of this because you don’t have much or you’re married or whatever. Often times, a good estate attorney can help you keep things completely out of probate, a gift indeed and a lot better than protracted, unexpected legal messes. Also, check out no questions asked life insurance. If a PALS lives two years from the time of purchase, it could pay out. ALS is financially distressing to devastating. Never be ashamed to think of your financial situation during your time as a CALS. My perspective is coming from the United States, I think in some European countries laws Are more clearly for the spouse or kids than in U. S. States, but do check it out regardless.
4. Don’t be afraid of exploring Hospice. We made good use of home hospice in our final year. We had many services covered that would not have been otherwise. At the point we agreed no more Rilutek, we were ready.
5. This one may be a little controversial, but I say accept your PALS choices, even if you don’t agree with all of them. If FTD is involved it gets more complicated, but In the end it really is your PALS one and only life, just my opinion.
6.Be ready to advocate for your PALS with medical professionals. You can end up in the weird experience of looking at Doctors and Nurses who are telling you incorrect things about ALS. You may find yourself in an ER full of medical staff who know less about ALS than you do. I looked at a Dr at one point and told him he needed to consult with Dr. Walk, our ALS specialist and that what he was saying was wrong.
7. Accept that very likely many, maybe even most of your friends and even relatives will fade away. People will pop up to help who surprise you. Some of the leavers will likely try to fade back in after your PALS passes, Kleenex in hand and talking about how it was hard for them. It’s hard not to be resentful, but don’t waste your soul on it.
8. The ALS society can be a precious source of loaner equipment. we got so much from them, including a smart home setup 100% free of charge. They don’t means test, it’s all whats available in your area.
9. Love yourself. For many of us this will be the worst thing that has ever happened to us. For all of us, it will be a tremendous challenge. If you are still working at a job, never put work ahead of yourself. I worked until a week before my husband passed for people who in the end treated me badly. Don’t do it. Caregiver giving you trouble, don’t hesitate to give them the shove off. Family in your face with how you are not doing it right? Shut them down, no apologies. Yes they are hurting too but YOU and your PALS are hurting AND working with it, so prioritize yourselves and each other.
10. Know you are never alone. Every CALS is with you. That’s not just words. I went to an ALS fundraiser a few weeks ago and here in reserved Minnesota had other ALS widows and current caregivers arms around me in no time.
This may all be worth just what you paid for it. Take what works, leaves what does not. ❤
Some will know that my husband passed in March this year, a few months short of three years from Dx. I’ve had about eight months to chew on how things went for us, and what worked and what did not. We are all individual, our situations unique but in the interests of maybe helping someone else I thought I’d post my thoughts.
1. Starting with the emotional side, all of your feelings are okay. Mad, sad, frustrated, heck even resentful as long as you don’t take it out on your PALS. If you happen to take it out on your PALS for a minute, to lose it a little apologize and move on. You are human, s/he’s human, and there are no demons or saints here, only humans trying to muddle through.
2. A bit more on the emotional side, grab your moments. You, and s/he live with ALS for often a long while before your PALS leaves this world. Enjoy the football game, enjoy holding hands or family or that great day on the deck. The moment is all any of us ever had.
3. On the financial side, if your PALS is game do the estate planning early and be done with it. If real estate is involved, make sure you get a real estate attorney involved, not just an estate attorney. Be very careful of the idea that you don’t need to worry about any of this because you don’t have much or you’re married or whatever. Often times, a good estate attorney can help you keep things completely out of probate, a gift indeed and a lot better than protracted, unexpected legal messes. Also, check out no questions asked life insurance. If a PALS lives two years from the time of purchase, it could pay out. ALS is financially distressing to devastating. Never be ashamed to think of your financial situation during your time as a CALS. My perspective is coming from the United States, I think in some European countries laws Are more clearly for the spouse or kids than in U. S. States, but do check it out regardless.
4. Don’t be afraid of exploring Hospice. We made good use of home hospice in our final year. We had many services covered that would not have been otherwise. At the point we agreed no more Rilutek, we were ready.
5. This one may be a little controversial, but I say accept your PALS choices, even if you don’t agree with all of them. If FTD is involved it gets more complicated, but In the end it really is your PALS one and only life, just my opinion.
6.Be ready to advocate for your PALS with medical professionals. You can end up in the weird experience of looking at Doctors and Nurses who are telling you incorrect things about ALS. You may find yourself in an ER full of medical staff who know less about ALS than you do. I looked at a Dr at one point and told him he needed to consult with Dr. Walk, our ALS specialist and that what he was saying was wrong.
7. Accept that very likely many, maybe even most of your friends and even relatives will fade away. People will pop up to help who surprise you. Some of the leavers will likely try to fade back in after your PALS passes, Kleenex in hand and talking about how it was hard for them. It’s hard not to be resentful, but don’t waste your soul on it.
8. The ALS society can be a precious source of loaner equipment. we got so much from them, including a smart home setup 100% free of charge. They don’t means test, it’s all whats available in your area.
9. Love yourself. For many of us this will be the worst thing that has ever happened to us. For all of us, it will be a tremendous challenge. If you are still working at a job, never put work ahead of yourself. I worked until a week before my husband passed for people who in the end treated me badly. Don’t do it. Caregiver giving you trouble, don’t hesitate to give them the shove off. Family in your face with how you are not doing it right? Shut them down, no apologies. Yes they are hurting too but YOU and your PALS are hurting AND working with it, so prioritize yourselves and each other.
10. Know you are never alone. Every CALS is with you. That’s not just words. I went to an ALS fundraiser a few weeks ago and here in reserved Minnesota had other ALS widows and current caregivers arms around me in no time.
This may all be worth just what you paid for it. Take what works, leaves what does not. ❤
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