Advice needed

[ARCG]

Crystal,

The breaking point for us came when my husband was transferring, leaning on me and fell, he was fine but I ended up in the hospital with stitches. He started agreeing to use the lift after that.
Its so hard being caregiver and wife, know that you are doing the best you possibly can in an impossible situation and after that fall I began telling my husband I was going to make an ‘executive’ decision when he resisted care that I knew was in his (our) best interest.

His anger was really directed at the disease, but when I was the one doing my best to care for him, it was hard to think of it that way. I hope you can get additional help, soon.

Annie

 

[affected]

Crystal you can do one single post and say things like:

Annie thanks for sharing that experience you had. (and personally I do really agree that their anger at the disease is so often displaced onto us as the closest person to them)

Tillie blah blah something else.

Don't get too hung up on anything - this is your thread, just say what you need, how you need, and we will all figure it out together

 

[Nuts]

Crystal, this forum saved me. Stay here, vent here, share here. I lost my husband two years ago and have trouble coming here very often right now, but something drew me here today. It must have been you. This is he most difficult thing you will ever do. Please, please please please protect yourself as you care for him. Speak to your doctor--he or she my have suggestions for helping you cope.I could not have made it without antidepressants. Also, at some point you may have to put your foot down in order to protect yourself. Those transfers become dangerous and you don't need injuries on top of exhaustion. The day I refused to help my husband use the transfer board any longer he ended up on the floor after trying by himself. Fortunately, we both ended up caught, but after that he no longer resisted using the lift.

 

[lgg]

Crystal, I second what everyone has said. My PALS finally agreed to a lift after he and I fell together at the hospital (of all places!!) during an ALS Valentine’s party. We moved to a new part of the country while my PALS was about 18 months after diagnosis. I left the ALS support group that was so helpful. But, I soon found that the ALSA has a CALS support group here. Since Covid we’ve been meeting monthly via ZOOM. If your area doesn’t have such a group, call the state ALS Association. I am sure you would be welcomed anywhere. Good luck. I’m still in your shoes and so glad you reached out. Leslie

 

[Sonne]

There's nothing irrational or over emotional when one has to care for a loved one and care for themselves. Nothing. Take care of yourself first as if you don't you can't care for your husband. Honest direct conversations are always the best. You might ask your daughter if she can spend more time with her father if she is so concerned. You need time out away from your home situtation. Join some reading group or whatever. Something for yourself so when the time comes you are on your own life still has some meaning. You must keep up your friendships as they can slip away so quickly when we keep to ourselves. I worked in home care for 25 years with MS, ALS, Cancer, and so one. Then my husband got non-hodgen lymphoma and was ill for 5 years before he died. I worked, cared for my husband and had 2 teenagers to look after. I now have ALS. So I pretty much know all the angles. If I hadn't had the support of friends I could never have manage. There is always so much more we want to do but we can only do what we can.

I'm in Canada where we have free home care regardless of your situtation so I get almost all the time I need. We also have hospice groups that can offer some hours, the ALS Ass. that offers some help and other agencies connected to home-care that can help. Some church groups will also offer support to your self. We also get whatever equippment we need through home-care, including beds, mattresses, lifts and so forth, so I do have a hard time understanding why people in the States seem to have such trouble. Take whatever help you can get and if it's not offered do some digging.

I know it's a battle at the best of times but when you get settled into a routine it will be easier on you. As a home-care worked I often had to sit down with the family and tell them what they needed and where to go to get it. So often caregivers get ill themselves and they just can't do it. I know right now no one wants to look at long-term care but sometimes that is what is needed. I'm sure you love your husband greatly but sometimes these decisions must be made. With placement comes all those hours that your not able to do. You can still be there throughout the day helping with baths and so forth. I've sworn up and down to my sons that I will not be going into long-term care but we can't control the future and who knows I just might end up there.

No one will fault you for doing your best.

 

[crystal1]

A huge thank you to all of you who reached out to me with terrific advice. You are all very brave and my prayers are with you. Sonne, I am lost for words at your courage and I am very humbled too. My problems are tiny in comparison with what you have endured and are continuing to endure. Take care everybody XX

 

[Sonne]

Really? Not so brave. It is what it is. We do what we ca. We do our best. We put love and respect at the forefront of all our decisions and actions and no one can say we have been anything less. All the best for the holidays.

 

[crystal1]

Well put, Sonne. Happy Christmas to you and all the best for 2021.