My final post (from a previous blog) about caring for my mom.
Alzheimer’s – Our story concludes
Our story reached its inevitable conclusion in June. In the end, it was a broken hip that took my mother. I’m not interested in doing any sort of report out on faith or religion, but I will say that I think my mother is in a better place. Or if nothing else, she is no longer trapped inside a person she doesn’t know. I am okay with that.
I want to wrap this story up with some final thoughts. Of course YMMV. Every situation is unique, but there may be some common threads you can pick up.
Emotions can surprise you. Think what you will, but when my mom passed, I felt no guilt. I felt as though I had done my very best (see previous posts) and I felt I had closure. Of course there have been tears, but what I really feel is relief. For her of course, but also for me. In fact, the sadness I carried around while she was alive has ebbed rather than increased. This is how it is when you grieve in advance. It is a cycle, but that’s where I am now.
“You are doing your best, and that is enough.” I thought back to all of the things that anyone ever said to me when they counseled me about my situation, and the #1 most helpful thing anyone ever did was to help me see that my heart was always in the right place. For that reason alone, I can say without a doubt that I always, always did the best I could. You cannot expect any more from yourself.
Things change, sometimes quickly. As I mentioned in my last post, my mother turned a corner at some point. One day she woke up and was in decline. There was no obvious precipitating event. I saw it in other residents as well. Expect the unexpected, I guess.
Use your skills to organize, prioritize, and prepare. Thank goodness for my creative problem solving skills, my ability to map information, constructively confront, and project manage. All of these skills were critical. You are in effect managing two lives while you are a caregiver. Even my ability to ZBB came in handy. Sorting out what belongings to keep vs. what to donate comes to mind. This topic would have made a great post all on its own. Perhaps someone out there has or will begin a blog about their experience, and cover this in depth.
Stay on top of the business. Build a file that includes all of the critical information – medical history, financial information, you name it. The basics should be handy at all times. Keep detailed records – and keep receipts. Get the legal paperwork completed – in the U.S., this meant having Legal and Medical Power of Attorney, and becoming a Representative Payee with the Social Security Administration. This comes with a LOT of guidelines on what you can and cannot do as the person receiving the SSA funds. For example, I had to have a specific bank account clearly labeled as a Rep Payee account. That was the ONLY account her check could go into, and ONLY that check could go into the account. Your credit union or bank should know how to help with this. Once a year, I got a form from the SSA, asking me to account for the money spent. Easy enough in her case – her entire check went toward the monthly rent at her facility. Still, keep receipts. My mom did not have a Will, nor did she have an Executor identified. Power of Attorney generally ends with death. So… that’s important.
Caregiving is a team effort. My original intent in blogging about my mother’s journey was to tell the story of caring for my mother in her own apartment and then finding her a long-term care situation. I got sidetracked on that. It’s a really important part of the story and so I want to give an abbreviated view.
1) It took a monumental effort to get my mother to move 200 miles away from her home town to live near her kids. It took the same level of effort to get her to move into a facility. We found mom an apartment 6 blocks from my house and hired a caregiver to come in for 4 hours a day. At the end of the day, I’d go over and make dinner and spend a little time with her. You definitely want to try to maintain that independence as long as possible. However, we over estimated mom’s ability to stay alone. Nearly every day, I found her in tears. Moving is hard when you have all of your faculties. When you are impaired in any way, it is harder. When you have dementia, it is terrifying. I’m no expert, but I think the likelihood of Mom “adjusting” to living in an apartment on her own was never remotely possible. But we stumbled along.
2) What I’ve Learned: invest in an ID bracelet or a tracking mechanism (there are online stores that sell these sorts of devices). Before she moved into adult foster care, my mother wandered off. The police found her two miles away. Under normal circumstances, walking around the block to church was nearly too difficult for her physically. Stuff happens that you never imagine possible. Super-human strength is not unusual.
3) Facility is not the right word, because she moved into the most fantastic place I could ever have found. It was a small place – 5 residents total, in a lovely house. They call it Adult Foster Care, but in reality, she was at Home. I cannot tell you how lucky we were to find a place so loving and kind. It makes all the difference in the world to have a place skilled in dementia, and it’s a HUMUNGOUS bonus to find a place that literally hugs your loved one each night before they go to bed. Do not underestimate the power of a good caregiver. It improves quality of life for both your loved on AND you. The peace of mind you get is a small sliver of a bright spot in a pretty gloomy situation. But…
4) Finding a great place doesn’t signal the end of your responsibility. I saw residents there that rarely had a visit. All the warm caregiving in the world can’t make up for a visit from a loved one. I was lucky – my mom knew me right up to the end. That is not true in all cases. Still, even if they don’t know you, they know love when they see it.
5) Beyond that, you have to be actively involved – you need to know what’s going on, help provide context about things they say or do, translate where needed, partner up to make good decisions about their medical care.
It’s going to be a wild ride. Some people with dementia settle into a sort of peacefulness. Others can be angry, frustrated and frustrating, grumpy and sad. My mother fell into that latter category. So it was not always a lot of fun to visit or take her someplace. It isn’t really about fun though, is it? It’s about caring for your family member. I will be honest – at times I felt a certain amount of despair that the situation would never end, and I felt imprisoned. Take breaks when needed, don’t feel guilty about having a vacation. But remember, also, that the company will live for an afternoon if you want to take your mom for ice cream. To all my co-workers and my manager, I can’t thank you enough for helping me see this fact.
To all my fellow caregivers or others touched by Alzheimer’s: please know that should you EVER need someone to talk to, do not hesitate to drop me a line. It is my mission to make the road a little easier for my fellow travelers, just as others stepped up to offer me advice. Though my road is turning in a new direction, I would be honored to be a kind ear, a sounding board or (I hope) a wise counselor.