In other words, what steps do you wish you and or the person for whom you are caring had taken before things progressed to where they now are? What conversations do you wish you had had, and with whom? What organizational steps do you regret not having taken? What legal, financial or moral obstacles have you faced that might have been avoided?
I am not posing these questions for people to wallow in regret so much as to gather the information together so people can learn from our mistakes. Thanks!
Thank you so much for your thoughtful response. What do you think you can do now to forestall more problems down the road? I hope you take the following in the spirit in which it is offered, an attempt to be helpful. Are her legal and financial matters in order now? Does she have a living will? Has she signed a power of attorney? Does she have a will and if so, has it been updated recently? Are her finances in order and set up for you, or someone else, to take over and handle them? There are things you can still do to make your life easier. If I can help you with a check list, let me know and those of us on this site can give you some ideas. It is a tough road you and your mother are on. The multiple chronic illness situation can be very problematic with respect to your mom's quality of life. People in her situation can have a very diminished quality of life but be on a medication regime that will keep them alive but miserable, which may not be what she wants. These are very difficult issues to discuss with a parent or to contemplate but well worth raising with her if you can. Most importantly, don't forget to save time for yourself and to take care of yourself. All the best for a happier and healthy new year.
I am very sorry to learn of your husband's passing. From your posts and comments, I am confident that you were an enormous source of strength to him and did all you could to make things better. I really appreciate your thoughtful response to my question. The more we can learn from each other the better so sharing is critical.
Thanks again, and all my best wishes.
Jeannegibbs- I am so sorry for your loss. Your post is wonderful. Blessings.
Crystal-hugs to you. You sound like a wonderful daughter.
@aging consultant - I have many things that come to mind and the first one would be I wish I had made plans to have my father spend time in respite or have my family take him to their house for a weekend taking turns. I say this now when I know it is near impossible and I wish I could take him out but he stays in bed every day. I also wish I would of talked to his doctor and had him or her explain to my father what was going on with him so he would not worry so much. I believe it is the duty of the doctors to tell the patients these important things and the family as well. Not that they are playing God but they know more than the general layperson or family member. I can't think of anything else as it is late here but I would like to come back to this posting to read what others have to say as well. Great questions! Hugs to you and Jeanne too.
1. I wish I'd had the walk-in tub installed as soon as it became impossible for him to use a regular tub. He enjoyed it so much when we did get it!
2. I wish I'd had the ramp walkway installed a few years ago. It is great, but he got very little use from it.
Things I'm glad about:
1) Consulting an expert on the kind of dementia he has. Learning as much as I could about the disease.
2) Joining a support group.
3) Consulting an Elder Law attorney early on. (Although I don't think I had a great lawyer.)
4) Consulting the county Social Services for a needs assessment almost immediately.
5) Doing as much as we could together as long as we could. We took a cruise to Tahiti the first year of his disease and a cruise around Lake Michigan this summer.
6) Encouraging him to do as much as he could as long as he could -- in particular bowling with a senior league and golfing with a league for people with disabilities.
7) Bringing in Hospice as soon as it became clear that would be appropriate.