This was posted by Vicki Deem on the Yahoo group cbdg_support. I found it a good review for me and possibly helpful for the newbies. BTW Vicki's husband was treated as a CBD patient but brain donation showed Primary Lateral Sclerosis. I guess that donation is the only way to find out what truly is the problem....
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I remember so when I was where you are. It *is* scary.
The good news is that you will soon learn to take one day at a time and let the fear go. You have a hard road ahead of you, no question. So does your husband. You’ll walk it together and you will get through it.
You didn’t ask for advice, so just ignore the rest of this post if you don’t want it. Here are some things that helped us:
1. Mike wanted to know what was happening, so he uses his computer to research the disease in the early stages. I was able to help him with good resources. I’m both a nurse and a librarian, so this was easy for me. You might want to seek out the assistance of a reference librarian if this would be helpful for you. Cure PSP also has some really good resources. We even enclosed one of their fact sheets with our Christmas newsletter shortly after Mike’s diagnosis. Learn enough to get a sense of what to expect, but don’t obsess. No two cases are exactly alike.
2. I wish I had set aside more time, especially early on when Mike still was able to get out and about, to make plenty of memories to hold onto after he was gone. But I’m eternally grateful for those we did make time for. Even after he was home bound, we did some fun things together and with our adult sons. It was good for them to have those good memories, too.
3. Make a detailed list of things other people could help you with. You may not need or get them all, but make the list anyway. When friends ask what they can do, you’ll not be able to think of anything otherwise. With the list, you can choose something that person is especially suited to do and ask for that. When you’re feeling in over your head, use the list to seek out help as well. Do not hesitate to ask! You have people in your life who love you and/or Ted and want to help, whether you realize it or not - neighbors, church or other organization members, coworkers and/or former coworkers, community volunteers, family members. Don’t hide your needs and you’ll be surprised how much help is there you didn’t even know about.
4. Consider bringing hospice in sooner rather than later, especially if they offer palliative care in your area. They aren’t just for people who are actively dying! Mike started getting hospice services when he was still going to work every day, and was with them for nearly two years. They were immensely helpful with equipment, supplies, respite, ideas for workarounds, volunteer companionship and project assistance, finding facility care when the time came, nursing care and communication with Mike’s primary care doctor and neurologist, emotional and spiritual support, you name it.
5. Get the equipment you need when you need it, but don’t get ahead of yourself and spend a lot of money on expensive equipment you may only need for a short while. Hospice can *really* help with this. For the big ticket items, think about how you’ll be able to use them after your husband is gone. (I know. It’s hard to think about his being gone at this point. And you shouldn’t dwell on it. But do be practical..) we bought a recliner/lift chair that Mike basically lived in for more than 1 1/2 years. Almost two years after he left me, I’m still using it daily. We also bought a recumbent exercise bike so Mike could continue exercising after he could no longer ride his regular bicycle. He only used it a few months, but I held onto it. It’s coming in quite handy now while I’m rehabbing a knee replacement!
6. If you haven’t done so already, get a durable power of attorney for yourself and set yourself up as the designated payer for social security.. Mike was nervous about doing this, but he knew it was necessary. I kept him in the loop and got his agreement with every decision, and that let him know he could trust me to make the same decisions he would. His cognition was slow but lucid until the end, thankfully. Some people have to make those decisions without input from the person they are making them for. We waited almost too long to set the social security thing up because we didn’t realize they didn’t recognize a POA. Once Mike could no longer sign his name or speak clearly on the phone, both were essential and I was glad we had the foresight to put them into place before we got that far.
7. Know that when you are stressed, it may be hard to figure out what to do first even with simple things like getting up in the morning. I made myself index cards for the bathroom and kitchen with step by step instructions for morning and evening routines (4 cards). Then I put them back to back in two snack size ziplock bags to waterproof them. When I was so overwhelmed I was paralyzed just trying to figure out whether to brush my teeth or take a shower first, all I had to do was follow the list. I still use the bathroom list sometimes.
8. Keep a variety of grab and go meals on hand for when cooking or even planning is just too hard. If you have a good size freezer, use it liberally. Same goes for you slow cooker. When you do cook, make big batches and freeze single-serve microwaveable portions. If anyone offers to bring you a meal, let them!
Hang in there. You’re a hero, whether you want to be or not. Keep the focus on what still works and on what is still good about your relationship. It will get you through the frustrating and sorrowful times.
Vicki W. Deem
Wake Forest, NC