A bad call
The police called last night at 12:15 a.m. from New Jersey.
Ben's mother had called 911. Twice. To try to get her son arrested, or at least to get the police to force the return of her car, which Ben had illegally taken from her in cahoots with her doctor. At the police officer's request, Ben called her back, knowing it would be yet another high-pitched harangue, which of course it was. He went downstairs to make the call so as not to disturb me (as if I could sleep), but at one point came back up just to silently hold the phone near my ear so we could both hear her nonstop screaming. With great although not infinite patience, Ben explained yet again, over and over, that he had taken her keys and arranged to have her car removed on the strong recommendation of her doctor, therapist and geriatric care manager, since someone with Alzheimer's disease is much more likely to confuse the brake and gas pedals while driving, or to forget to look both ways at a stop sign. She doesn't need a car now because she has a home health aide visit every day for several hours to make her lunch and dinner and to take her shopping or wherever she needs to go. The first time the aide came over, she found her fridge full of spoiled food. But G. doesn't want the aide to take her shopping. She wants her car back so she can go to the store herself two or three times a day to buy what she's going to eat that day (if she remembers to eat at all). She can't buy much food at once because she can't remember what she needs and she can't bring herself to pay the suddenly outrageous prices.
So this is Alzheimer's. The memory loss of course I expected. The hurt at the loss of independence certainly isn't surprising. What neither of us anticipated was the total denial that there is any problem at all. And the uncontrolled anger and, well, venom. Because the woman I met 10 years ago was not an angry person. She was giving and generous, kind to a fault even while not always realizing the consequences of her words -- but in a clueless way, not a hurtful way. Now she's using her talent at pressing every button in the book to make Ben feel bad, which is certainly not something she used to do. "I feel completely betrayed! "Who are you to make these decisions for me?" (He didn't -- the professionals did.) "How could you do this to me without even the courtesy of discussing it with me?" (He did, many times, and so did her longtime personal physician, Dr. L.) "Well then, Dr. L is a shithead! She never even examined me!" (Um, yes she did, and so did a neurologist, and both sent you letters with their findings, but those letters seem to keep getting lost.) "Who gave you the right to do this?" (She did, when she signed a health care proxy stating that Ben would handle her medical and financial affairs if her judgment became impaired.) She doesn't remember any of this, of course.
So we begin the day on about four hours' sleep, dreading the next call. What do you do when a parent needs to be in a memory-care facility (we're well past the point of independent/assisted living) but refuses to even discuss moving out of her house? Who fought tooth and nail against the idea of a visiting aide and won't cooperate with her? Who is depressed but refuses to take antidepressants "because there are no long-term studies on their effects"? (Hey G., no offense, but you're 81 -- you won't be around to experience any long-term effects.) "I want a divorce!" (Paging Dr. Oedipus, code blue.) "I'm calling the police and they are on the case! I'm calling a lawyer!" (Okayyyyy....) "I can't believe you of all people [favorite son] could do this to me! I've lost a son and you have lost a mother!" (In this case you're absolutely right and it's almost unbearable for both of you.)
The kids understand at a basic level what's going on with Bubbie but are obviously still hurt when one of us snaps at them. Ben is stressed and heartbroken. The decisions are pretty much his alone. Will he need to have her physically removed from her home? Will she do something even more painful and unexpected? Will Ben survive this drawn-out drama with a shred of his own sanity intact? Stay tuned...
Postscript: Just before I was about to hit "post," I did a quick check on another blog I regularly read, and it brought things into some perspective. Losing a parent, literally or figuratively, is terrible, but it could be much worse.
Ben's mother had called 911. Twice. To try to get her son arrested, or at least to get the police to force the return of her car, which Ben had illegally taken from her in cahoots with her doctor. At the police officer's request, Ben called her back, knowing it would be yet another high-pitched harangue, which of course it was. He went downstairs to make the call so as not to disturb me (as if I could sleep), but at one point came back up just to silently hold the phone near my ear so we could both hear her nonstop screaming. With great although not infinite patience, Ben explained yet again, over and over, that he had taken her keys and arranged to have her car removed on the strong recommendation of her doctor, therapist and geriatric care manager, since someone with Alzheimer's disease is much more likely to confuse the brake and gas pedals while driving, or to forget to look both ways at a stop sign. She doesn't need a car now because she has a home health aide visit every day for several hours to make her lunch and dinner and to take her shopping or wherever she needs to go. The first time the aide came over, she found her fridge full of spoiled food. But G. doesn't want the aide to take her shopping. She wants her car back so she can go to the store herself two or three times a day to buy what she's going to eat that day (if she remembers to eat at all). She can't buy much food at once because she can't remember what she needs and she can't bring herself to pay the suddenly outrageous prices.
So this is Alzheimer's. The memory loss of course I expected. The hurt at the loss of independence certainly isn't surprising. What neither of us anticipated was the total denial that there is any problem at all. And the uncontrolled anger and, well, venom. Because the woman I met 10 years ago was not an angry person. She was giving and generous, kind to a fault even while not always realizing the consequences of her words -- but in a clueless way, not a hurtful way. Now she's using her talent at pressing every button in the book to make Ben feel bad, which is certainly not something she used to do. "I feel completely betrayed! "Who are you to make these decisions for me?" (He didn't -- the professionals did.) "How could you do this to me without even the courtesy of discussing it with me?" (He did, many times, and so did her longtime personal physician, Dr. L.) "Well then, Dr. L is a shithead! She never even examined me!" (Um, yes she did, and so did a neurologist, and both sent you letters with their findings, but those letters seem to keep getting lost.) "Who gave you the right to do this?" (She did, when she signed a health care proxy stating that Ben would handle her medical and financial affairs if her judgment became impaired.) She doesn't remember any of this, of course.
So we begin the day on about four hours' sleep, dreading the next call. What do you do when a parent needs to be in a memory-care facility (we're well past the point of independent/assisted living) but refuses to even discuss moving out of her house? Who fought tooth and nail against the idea of a visiting aide and won't cooperate with her? Who is depressed but refuses to take antidepressants "because there are no long-term studies on their effects"? (Hey G., no offense, but you're 81 -- you won't be around to experience any long-term effects.) "I want a divorce!" (Paging Dr. Oedipus, code blue.) "I'm calling the police and they are on the case! I'm calling a lawyer!" (Okayyyyy....) "I can't believe you of all people [favorite son] could do this to me! I've lost a son and you have lost a mother!" (In this case you're absolutely right and it's almost unbearable for both of you.)
The kids understand at a basic level what's going on with Bubbie but are obviously still hurt when one of us snaps at them. Ben is stressed and heartbroken. The decisions are pretty much his alone. Will he need to have her physically removed from her home? Will she do something even more painful and unexpected? Will Ben survive this drawn-out drama with a shred of his own sanity intact? Stay tuned...
Postscript: Just before I was about to hit "post," I did a quick check on another blog I regularly read, and it brought things into some perspective. Losing a parent, literally or figuratively, is terrible, but it could be much worse.
Comments
I'd love to have your permission to use this story in our training new caregivers about what family members experience. It's so important that they have a sensitivity to the family's experience as they prepare to care for individuals in memory care or assisted living settings.
Here are a couple of tips I've learned from family members over the years that may be of use to you:
1) Don't argue. Reality for your loved one is her true reality. Since you can (and she can't), move into her reality rather than insist she move into yours. If something is "stolen" because it can't be found, offer to do everything you can to get to the bottom of it. If she insists that she has never gone to the doctor, agree with her, and offer to make an appointment. Agreeing can diffuse the situation and take all the wind out of her anger, leaving you both some emotional room to find solutions.
2)Do whatever it takes to keep her safe. Again, focus less on "truthfulness" and more on what needs to be done to preserve life - hers and others, especially in relation to driving. Many families find that removing a crucial element of the engine (the distributor cap, for example) will cause the car to simply not start, keeping you in the "good guy" category rather than being the enemy. Then, your offer to drive will be a good thing. Families need to become comfortable with moving into their loved one's reality and not be so concerned with feeling like they are lying to the person with memory loss. Doing this in a loving, thoughtful way can preserve the relationship and take a lot of the pain away - give it a try.
3)Start the move ASAP. Many memory care centers are excellent resources. Caregivers can take over the day to day safety and functional necessities; you can become the family that visits and goes out to dinner together again. Often non-family caregivers can get a person to cooperate so much easier. To make the move, try telling mom that you've made these arrangements for 2 weeks to give her a break from the house. She doesn't have to stay if she hates it there - just give it a two week trial. Many people are still on their two week trial several months down the road - it's the only way they can face their losses so that they don't overwhelm them.
Most people with Alzheimer's or memory loss have moments of clear recognition of what they've lost or are losing. Imagine how distressing this would be to you - and it's much easier to understand why mom is angry and frustrated all the time.
Anything you can do to reassure her that no matter what she's experiencing, you'll be there to support her, help her and love her will be the very best thing that can happen to her right now.
If you'd like I can send you more tips on coping with a family member with memory loss - just email me at Sharon@ISLE-ed.com.
Good luck. Let us know how it's going, and if we can help in any way. It's a challenging journey, but you're not alone in this.