Knowing what you now know, what plans do you wish you had made earlier in caregiving?

My husband died last week, after 9.5 years of Lewy Body Dementia. There isn't much I regret.

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.

First let me send Jeannie my condolences and prayers at the recent loss of your father. I am sorry to hear that. It sounds like you did many great things with him. Precious Memories...
@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.

I will be reading the responses here as I think this is a great question and one that could really benefit me.

Jeannegibbs- I am so sorry for your loss. Your post is wonderful. Blessings.

Crystal-hugs to you. You sound like a wonderful daughter.

My mother has multiple chronic illnesses that I should have known (how could I NOT have known???) would cause a need for caregiving, yet I did not prepare myself for. It seemed she went from "doing okay on her own" to having to move in with me overnight. Looking back, that was not the case - she was just good at pretending she was doing fine, and I was willing to believe her. There were so many signs that I missed, and so much planning that should have been done over the years. What I WISH I would have done is insist that my mom pay for long-term care insurance when she was healthier & qualfied for it. I wish I had gone back to school and work as soon as my youngest child was out of school - instead I got "comfortable" being a homemaker, and only recently went back to school. Just as I was ready to get back into the job market, you guessed it...Mom's health deteriorated to the point she could not live on her own any longer, so she moved into my house and now I'm stuck at home caring for her. She gives me a small amount each month to "help out", but it isn't anywhere near what we need to save for our own retirement and nowhere near covers the added expenses of having her here. I eat up most of it just filling my gas tank to take her to her doctor appointments each month. If there was a do-over button available, you can bet I would take advantage of it now!

Jeanne, I am so sorry to hear of your husband's passing. You have given so much wonderful advice and are such a caring person. I hope to continue seeing your posts on this site. I know your life will change in the future and I pray you find peace. Know that many on this site say a pray for you and wish you better days.

Jeanne, also very sorry to hear of your husband's passing. You're words of wisdom have comforted many on this board. Thoughts and prayers are with you.

Jeanne,
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.

Purplesushi,
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.

Thanks for your response, agingconsultant. My mom does not have a will (she has no estate to speak of other than personal possessions here at my house, and I already know who she wants to have what). She has a POLST form, and I am already aware that she does not want to be kept alive on machines, yet she has not gone one step further signing a DNR. The doctor has already informed her that in her condition, should she undergo cardiac arrest and being on full-code status, she will more than likely come out of it in much worse condition than before (broken ribs, etc.) and he said it isn't a something he would wish on his own mother. Her quality of life is not good, and hasn't been good for awhile now. I would say she is simply "existing" as opposed to living. We try what we can to give her options for hobbies, etc. and are always refused - she seems content with sitting & watching TV all day and complaining about everything under the sun. It is draining the life out of me. Her medications for diabetes, rheumatoid arthritis, atrial fibrillation, thyroid, pain relief (percocet), nerve pain, etc. would be enough to make anyone depressed, which I am sure she is also, but she refuses to take anymore medications on top of the stuff she's taking now so she won't ask one of her 5 doctors about it. She just had hip replacement surgery in September, and has already fallen & dislocated the new hip joint resulting in another trip to the hospital. It seems every step forward she takes, there are 2 going back at this point. As for a power of attorney, that is definitely going to be done this year - I have already run into a couple of issues regarding some bills of hers that we need to fight, but since she can't hear worth a darn she won't talk to the people on the phone & they won't discuss it with me unless I have a POA. Any suggestions are welcome and are taken in the spirit of helpfullness...no worries about offending me, that's for sure. :)