Advice needed

[crystal1]

Could somebody please offer me any advice about my situation. I am a spousal caregiver for my husband who is in the late stages of ALS (three and a half years with this condition). We do have a caregiver, who is wonderful, but recently I am finding that I am not coping at all. I am getting overwhelmed. My husband and daughter say that I am irrational and emotional. My husband says that I am not capable of nursing him properly, especially during transitioning. What should I do? Who do I reach out to?

 

[nona]

I can see this frustration happening between my caregivers and me also. It feels like burnout. Aside from reaching out to your PCP or a mental health professional, in my area both the ALS clinic and local ALS Association have support groups for CALS. Could you reach out to one of those near you?

 

[affected]

Maybe start by seeing your PCP - I'm not sure how your health system works. You need help now though, don't delay starting this as any help won't give immediate changes for you, but there is help available. I don't know what the answer is but it could be a mix of support/counselling, medications, moving to hospice, more help in the home, exercise, meditation, respite. Not necessarily all of them. What I mean is that there are many ways you could possibly be supported better, so start now.

What you are doing is a huge thing, and feeling overwhelmed is completely understandable and a natural response. You need more help, either with looking after your husband or looking after yourself. I had a lot more help than it sounds like you have and I could feel overwhelmed.

 

[vltsra]

Dear Crystal, I hear you. We just passed the 5 year mark. My PALS function is pretty limited now. It is overwhelming to take care of someone who can do so little for himself. Add in all of the other things that need attention (eyegaze system, hoyer lift, hospital bed, bipap, non verbal communication) and it can seem like there is no way to handle things.

I dont know exactly what your situation is, but I have to break things down into small tasks. We CALS can only do one thing at a time. Are you getting enough sleep? Do you need more help? Does your PALS need hospice now?

I also have a caregiver who works days. I occasionally have meltdowns too. Over the weekend both sides of the split king hospital bed quit working, the eyegaze system made my PALS frustrated and angry, and the bipap mask ripped. It's frustrating and difficult every day. Covid19 makes it harder for us to do the things that keep us healthy. Just know that you are not alone. We are here and we understand.

V

 

[crystal1]

Thank you for your kind response. My husband refuses to use equipment apart from a walker, hospital bed and a wheelchair, and these are in moderation. Most of the time he leans on me bodily to transition him and when I cannot support him fully he loses his temper. He also downplays his condition to our health providers and tells me to "keep my mouth shut" so it is very fatiguing for us both. Thank you for replying. I am praying for you and your partner.

 

[jonico]

Dang Crystal, at 3 1/2 years into this ALS thing, I'd be worried about you if your weren't irrational and emotional. I'm pretty sure I hit that milepost a bit earlier than you. Like Nona says, the CALS support groups are a great thing...but that is more challenging now with Covid. Still worth seeing what your ALS Center has going on support-wise for sure. Tillie offered great ideas. Personally, I found exercise and fresh air crucial. Continuing to get out for my run, even if only once or twice a week was vitally important. Enjoying fresh air and nature was very therapeutic for both of us during our journey. That being said, I recognize how hard that can be for many PALS/CALS. I was never able to find anyone to really consistently commiserate with, but I didn't mind that much since I still had my wife and we were tight...even though it was never easy. I know the innate loneliness of this is really hard for all involved. I hope you can find a way to connect with people who can support you and reenergize you. Hang in there, and try best you can to not let the perception of others get you down. You're clearly amazing and you can do it....Jon

 

[affected]

Crystal - was he always this way or has he experienced behavioural changes making him so lacking in empathy and refusing equipment that would improve his quality of life?
I'm afraid you may have to really make some hard decisions about how long your part in this can go on. Him expecting you to physically support him instead of equipment is dangerous. What if you both fall and you are injured? How will he be cared for then?

I went through many of the things you are describing. Please start getting some help so you can develop some strategies. I truly know that this situation is far from easy, especially when he is not truly being rational, yet accusing that you are not.

 

[vltsra]

Crystal, your reluctance to physically support and transfer him sounds pretty darn rational to me. My guess is that he is bigger than you. As Tillie says, what happens if you fall and are injured?

Are you being seen at an ALS clinic? I have found that if I suggest things my PALS doesn't listen as much as he does when they suggest things. They have also been helpful to me in dealing with my husband's denial, which sounds like you may be dealing with as well. I find having a 3rd party with some perceived authority helps. They will tell him you need a hoyer lift, and your local ALSA should be able to help with that.

Hope you can get some help here so it's a little less overwhelming.

V

 

[lgelb]

V and everyone has great points, Crystal. The goal is either for you to break through with your husband in communication -- having an honest conversation about what could work and why this doesn't -- or for a third party to do so. If there is no one who can support you at the clinic, try at the ALSA or at your own physician's clinic or someone s/he recommends. It's not that uncommon a situation, but it's dangerous for you and him.

Anger and unwillingness to make equipment concessions to the disease can be fear and/or depression in disguise. If you think this is part of the issue, some CALS have asked their PALS to try antidepressants (or clinical team members have suggested it) and if that is refused, even to place them in food or formula unbidden. Others have asked friends, family, clergy, counselors, etc. that the PALS trusts to intervene. Having a plan A,B,C,D in these scenarios can help you get unstuck.

Best,
Laurie

 

[jonico]

Crystal, you and I posted simultaneously last evening, so I didn't realize the scope of the physical danger and emotional stress you are facing. Please do heed the advice of those who posted subsequently. I'm very concerned for you even if you get the critical support you need, but especially if you don't.

 

[affected]

I just realise that my response sounds really callous - how will you care for him if you are injured in a fall? I'm actually just as, if not more concerned for you, when I wrote my response that way I was purely thinking of how we tried to put these things across to my Chris when I was dealing with it. With no empathy, we tried to always make statements relevant to how it would affect him, not how it might affect me or others. So sorry if I sounded uncaring of you!

 

[vltsra]

Hey Tillie, I don't think you sounded callous. It's just CALS talk; I think we are all thinking about how our PALS will be taken care of if something happens to us.

 

[crystal1]

Thank you everybody for your kind words and advice. You were all awesome! I have taken note of things that were said and I will take action, although I will have to tread carefully with my husband's temper being what it is. God Bless you all and take care!

 

[affected]

Keep talking it through here as you go crystal - this stuff is hard on a daily basis.

 

[crystal1]

Thank you! I haven't figured out how to thank each one of you individually on this forum. I find it a bit convoluted.