I have spent the last six years caring for my ailing mother-in-law. In that time I have seen her deteriorate from a semi-independent woman who needed assistance such as preparing meals and handling other household tasks to someone who needs help with the most basic facets of life. It saddens me because in her prime my mother-in-law was a fiercely independent woman. Despite the fact that she has a developmentally disabled son, she never asked for help. Now she is unable to walk without assistance. What makes it both sadder and a relief is that she is unaware of how helpless she is. She is like an infant – knowing only that she needs something and relying on someone else to provide it.
I feel like Death’s handmaiden. I am not in any way contributing to this process (although dealing with this has given me a new appreciation for euthanasia). My task is to calm her, provide what she needs (to the best of my ability) and try to ensure she’s not alone if/when her time comes. Having said all of this, I cannot help and will not justify the resentment I feel about this situation; the rage that flares up inside me at unexpected moments. The desperate wish I have that it would all just be over and I could reclaim my life again.
I am no saint or martyr. This current situation is intolerable to me. I detest it with every fiber of my being. Sometimes I practically vibrate with it. Every effort made to find assistance from external sources (government agencies, visiting nurse services, etc.) has either proven to be a dead end or beyond our financial means. I’m not willing to put this woman, who spent much of her life caring for family members, into a nursing home where she will be strapped down and drugged until her body can take no more. I may hate the lack of control and independence I have in my life right now but I would have that situation even more. I also don’t think I could forgive myself for it.
Well-meaning friends and acquaintances have spouted various platitudes about some divine being who does not give us more than we can handle. Generally my response is either a pained grimace or a colorful rejoinder which includes various profanities (depending upon how well I know the person). I bitch and moan to anyone and everyone who will listen, including the indifferent gods whose existence I honor. I get it – this will end when it is meant to end. However I must reiterate that it sucks beyond measure.
The main take-away I’ve gotten from this experience is a fierce determination not to find myself in a similar situation. I have no one that I can count on to care for me if I end up like my mother-in-law. I’ve also seen the various nursing home facilities available for elderly people in this condition and the reality is that if a family member is not a regular visitor and if one’s health coverage doesn’t provide enough benefits, the patient/family member ends up ignored, neglected, and even abused in some circumstances. That thought gives me nightmares.
I don’t believe we deal well with death in our modern culture. We fight it with a desperate determination that often results in circumstances like this one. The body keeps going because medical technology can maintain the status quo but it can’t do much to stop the progress of diseases like Alzheimer’s and dementia. So the body is kept alive and as healthy as possible while the mind continues to disintegrate.
Support services for caregivers who are tending to family members in this condition are minimal and (in my experience) woefully inadequate. It’s wonderful that there are support groups, but if I cannot leave the family members alone how exactly do I attend? Home visits from doctors? Oh sure they still happen, just not in this part of the county. Home care assistance? It’s available but not to my mother-in-law because she’s not on Medicaid. My brother-in-law (who is deaf and retarded) is eligible but services cannot be activated without a doctor’s approval. No doctors make home visits in this area and he will not leave the house without a serious fight. It’s a Catch-22 that leaves you bitter, exhausted and defeated. I hate it!!! In fact, I cannot stress how much I hate it. The only thing I would hate more is to have to institutionalize these two people that I love. I accept that. It’s the trade-off I make in my life. I’ll put things on hold to tend to them and I can still face myself in the mirror and sleep at night. It’s not a perfect situation but it’s the best I can do right now.
So if there is anyone else out there who has found themselves in similar circumstance, please know that you have my respect and admiration. It’s a thankless task that is fairly unappreciated by the wider society. Make sure you keep in touch with friends somehow or else the isolation with warp you. Take care of yourself. Even if all you can do is spend 10 minutes every day one yourself, treat that time as sacred. I’ve done the “giving my all to the relatives” trip and burnt out quick. I have found the work of Jennifer Louden and SARK to be inspirational and helpful in dealing with all of this. I still find it difficult to balance time for me with their needs but I’m stumbling along and finding ways. And if your choices are different than my own and you had to make the agonizing decision to institutionalize your loved one, please know that you have my sympathy and support. No one else can understand what you went through and how difficult it was for you to make that decision. Don’t allow anyone to shame you because of it. We are all just doing the best we can in this life and shouldn’t be held to someone else’s standards or expectations.