Can they continue to live (and die) at home? I really believe it can be done- Am I crazy?
Thank you to all kind words on this site. The collective "you" have so much wisdom, practical advice and genuine empathy. Again, Mom and Dad wanted to live at home until their last breath. To make that possible, I put my career on hold (June 2016) and moved in with them. Dad is probably between moderately and severely decline stages. He is not eligible for hospice now, but could be this year. Mom too has a diagnosis of dementia, but not as bad - mild to moderate. I really believe home can still work for them. I have some help now 2-3 days a week, 3-4 hours on those days. My family visits occasionally- that helps. I know I'll have to hire more help before and during hospice support. I've learned so much in the 18 months. I know there is so much more I do not know. But, from you - please tell me - can it be done- can they continue to live (and die) at home? Or am I unrealistic? Thank you
If your parents have enough resources that you can see increasing the help they have at home, and if you can get away for some respite now and then so you don't burn entirely out, keeping them at home may be possible. Try it. What do you have to lose?
But have a backup plan! What if the care one or both of them needs drastically increases? What if one becomes belligerent and violent? Lots of things can change unexpectedly. You have to be flexible and realistic.
I never promised my husband he could stay at home through the full course of his dementia. I promised I would never abandon him. I would always try to see he had the care he needed. I would always be his advocate, no matter where the best place for him to be was. As it turned out, he died in hospice care in our house. But I couldn't in good conscience promise him that.
Thank you- wonderful and realistic advice. A back up plan is due. I've had nothing but criticism from my sister and now that the disease in both parents is progressing, we do need to come together in a back-up plan. She still wants us to all move to her home and "work together" to care for our parents, which adhere to her daily plans. Still not sure that is a viable plan. Mom just forgot who Dad is- 1AM- She has done this a couple of times as well as he has forgotten her in the middle of the night, more than once. More to come, I know.
Thank you, again - jeannegibbs
It might help to have a facility in mind if it comes to that. And if it comes to that it will probably be in the form of an accident or mishap or illness that couldn't be anticipated. Something out of the blue. So find a facility that will meet their needs and put it in your back pocket for now. It's much easier to do this now than in the midst of a health crisis.
Remain open-minded about your parents' dementia. One of your parents' dementia may progress to the point where it endangers the other parent. In such a case one of your parents will need to be taken to safety (that facility you have in your back pocket).
Or, your folks may just muddle through in a confused haze content with their daily routine and accustomed to your in-home help without the health crises, frequent falls, or aggression commonly caused by dementia. Be optimistic about keeping them at home if you can but remain open-minded about needing a facility at some point. I'm more concerned about you actually than I am about your parents. Your parents have you and their in-home help. Who do you have when it gets to be too much?
My mother stayed with us at home until her death at 99 years and one month! It was definitely challenging but absolutely worth it. I could not have done it without the support (emotional and financial) from many brothers and sisters as well as my husband and kids.
A general backup plan is something that can bring peace of mind. But there is no way to know what will happen or to be fully prepared. Much like being a parent, caring for loved ones with medical issues takes flexibility and the realization that improvisation is a necessary skill to have!
One thing I do suggest is that you have a clear understanding of their preferences. My mother had been clear, she wanted to avoid doctor's visits and hospitalizations. I promised her I would absolutely help to make sure her health care goals would be respected. We went to the doctor twice a year, and she did not go to the hospital except when she broke her hip. Even after that, we had her home as soon as possible.
Having a clear idea of the goals will make things easier to deal with when things get tough and decisions need to be made. Medicine has made so many incredible advances; it can be easy to think that there is a way to avoid the unavoidable. Our lives on this earth are finite, each of us will come to the end of life at some point. While it is natural and even healthy to want to postpone the end of life for as long as is possible, there comes the point where the delaying is futile and even harmful. Indeed, studies have shown that often the more money and advanced medical methods we use for people approaching the end of their lives does not improve care but does increase suffering.
80% of us wish to die at home and yet, only 20-30% of us do. Why is there this disconnect? It is easy to see the reason when you look at the patterns most people follow as they age or as a chronic illness progresses. There is the slippery slope.
I wish you well as you continue this journey with your parents. Be sure to take time for yourself and know we are cheering you on!
Best of luck,
Margaret