For some time it has been becoming more and more obvious that my mother’s mind was not quite as sharp as it has been most of her life. She is 83 years of age.
A few months back I had cause to ask for a dementia evaluation, which her doctor was happy to administer. Mom scored ‘okay’ on it, but the score prompted concerns enough to request a full geriatric evaluation. I accompanied her to the evaluation, spoke with the doctor and the social worker assigned to the case as well, and Mom underwent the testing. The results, while not at all a surprise to me, showed that Mom has dementia. Mom immediately (and to this day still has) denied that this was the result. She adamantly refuses to accept or acknowledge the diagnosis. This has made the follow up conversations, and the arrangements that have begun for the next chapter of her life, very challenging to say the least. She is moving two hours away from the home she has occupied for 48 years. She faces a geriatric driving exam which even she lacks confidence that she will pass, and therefore faces the loss of her ability to drive. She has reached a stage where life has, seemingly, more to take away than it has left to offer her.
Reaching this stage scares her. When we discussed her living arrangements last week, and the need to change them, she accused me of ‘coercing’ the results of her testing…she threatened to revoke the power of attorney/medical p.o.a. she granted me several years ago for just such an occasion – to care for her in her own incapacity to care for herself. My dad lashed out at my brother in this way – and at the time I told him to remember that it’s not about him, it’s about the dementia. I ate those words and choked on them last week, because to be accused of the things my mother accused me of hurt, initially…and it took me a bit of time to remember that she’s just as frightened of what’s happening to her as I am determined to assist it.
I have many friends struggling through this with their own parents. My father was diagnosed with dementia in 2006, in conjuncture with a mild stroke. My grandmother declined to the point of not recognizing me up until her death in 2013. It is a slow, sad, agonizing process for all involved. My father has not yet forgotten me, but may at some point. For now his long-term memory is still amazingly good, and I revel in the stories he shares, as in both our younger days my father and I were not the best at communicating with one another. Now, I learn things I might never have known, and value the opportunity to do so.
On my last visit with my grandmother, prior to her ‘giving up’ and deciding to exit quietly from life without eating or drinking, I called her ‘Gram’, as I always did, and she did not question how we knew one another. We passed a few hours chatting like new friends who just had a remarkable ease with one another. At the end of the conversation she said, ‘I wish I knew who you are, because you seem awfully nice.’ It was a bittersweet moment for me…in the realization that she did not know me, yet liked me anyway, irrespective of our familial affiliation.
Now, sadly, it is my mother’s turn to battle with the encroaching twilight in her mind. She finds an invisible veil being pulled over the names, dates, locations, and conversations of recent history that she so easily recounted before. Events from decades ago seem brand new to her, and old hurts and regrets are revisiting her as if the cuts are fresh, and very deep. She still rises each day, still dresses, still can put together a plate of food; but during conversations with her she asks the same questions multiple times, and the repetitive answers seem like new information to her.
I have realized, early on in this process, that I have much growing to do as a person if I am to help her navigate all the changes and all the loss. I don’t fear my mother’s death, I fear the way she’s going to live between now and then. I fear her sorrow, her despair, her frustration and terror when her life, her surroundings, her very existence becomes more and more of a mystery to her. Presently she isn’t a danger to herself, really, but there’s enough memory concerns that I need to have her closer, to pay more attention to her, to pick up on the nuances of the progression of the dementia, and hopefully provide her with greater safety and comfort in the process.
For anyone who might read this post, and is facing these challenges with their own parent/loved one, I applaud you. It’s not easy to take over as ‘parent’ to your own parent. It’s not easy to see your earliest example of safety and strength become frail and vulnerable. it’s not easy to nudge them toward this reality, when more and more of their reality becomes muddled by their condition. I have had to eliminate the word ‘dementia’ from my conversations with my mother, whereas it’s just a trigger for her anxiety and fear. I am reminded of hearing, a few years back, that you never want to tell someone with Alzheimer’s or dementia that someone they love has died. You are simply making them relive that death again and again and again the more often you present it to them. Deceased loved ones must become ‘busy’ or ‘out of town’ or some other polite excuse given to explain their absence. It’s not a malicious act…it’s the most kind thing you can do for them.
I’d like to offer some ‘pointers’ in approaching this condition with a loved one, both in terms of ensuring their safety, and in the day to day dealings with them, in the hopes that someone else might benefit from my experience, and from both my successes and ‘non-successes’ in approaching this with my mother. I am a complete novice, I just believe that by sharing, we all can grow.
1. As your parent ages, check things that are safety issues regularly – their smoke detectors, the lint filter in their dryer (which, when overloaded, can lead to a fire), their last chimney inspection, batteries in their alert devices – all of it. Check it regularly. They may not remember to.
2. Questions that begin with ‘Do you remember’ should be shortened by those three words. Most times the answer is no, they do not remember, and it will simply point out their memory issues to them once again. Just ask the question.
3. Dementia is not something people notice happening to them necessarily. Most times they don’t notice it at all, or may attribute it to just getting older. If they repeat, often, or don’t retain conversations from day to day, suggest accompanying them to the doctor to ‘meet them’ if you never have, and suggest perhaps a memory test just to see where things are at.
4. Take care of yourself when trying to care for someone else – it’s the golden rule of being a caretaker. You can’t help someone else if you are helpless. Get plenty of rest. Read, read, read about the challenge you and your loved one is facing. Find respite from the caregiving, even if it’s just a few hours a week to pamper you while someone attends to your loved one. Join a support group for caregivers, if for nothing else than to have a safe place to bitch about how hard it is. Never feel guilty if you get frustrated, angry, irritable, or annoyed – you’re only human, and by putting yourself in the position to be annoyed by it, you’re showing how much you love them. There’s no guilt in that.
5. Despite them being more like the child than the parent – they are still adults. They are still people. They deserve respect and dignity, even as old age ravages their bodies and minds. I especially have to remember this one, not because I have no respect for her, but because I approach things from a place of logic, not a place of fear and frustration, and I find myself lacking in patience when fear and frustration guide actions and words, rather than doing ‘what needs to be done.’ This is an area I really need to grow in. I am only human.
Last week my mother said something to me, called me something, that I’d never heard from her before. She, when we were near the height of our argument over living arrangements, called me a ‘rotten little bastard.’ I doubt she remembers it, but I do. It stung. However, should this happen again – should her fear and frustration take over again, I plan to refer to this blog post, where I will remind myself that I’m the bastard who loved her enough to take care of her despite the challenges. I’m the bastard who didn’t give up and walk away, no matter how difficult it got. In the end, as long as she is safe and cared for, being that kind of bastard is something I can live with.