Mom's in the hospital on high-flow oxygen. She'll be coming home and starting home hospice, when and if she is able to reduce her need to 10 liters or less...she's currently on 40 liters. The hospice people at the hospital have been very understanding and supportive...and while they've told us what to expect logistically, but I'm not really sure what to expect emotionally. Mom's doctor says she probably has about 3 months left. We have a 25 year old special needs son at home and he's pretty high functioning, yet needs a good bit of help. We have two 13 year old dogs who are failing, and one of them needs put down...just haven't been able to find the time to do it, sigh. And another 19 year old son who is a young father and struggling hard to make ends meet for his gf and baby...we had to put them up for a few nights, but I simply can't keep them here. Space is limited and so is the space in my head, which is already spinning with this tornado of events and what everybody else needs. I'm trying to get an appointment with a counselor to help with my mental housekeeping, but that's another frustrating challenge as the VA is completely inept at getting me a counseling appointment within a time frame that will actually be useful. Family will be coming in and out, wanting to spend time with Mom, and there will be nurses and aides in and out at all hours...I'm just wondering how I'm going to cope with all the visitors and stress and interruptions. People tell me to take care of myself first, but it seems impossible. I know it's all going to be temporary...I don't mean to whine as I know this is the last chance I'll have to spend quality time with dear Mom. I hesitate to get away even for a few days (heck, hours) with her condition being what it is. I look forward to having help, but don't look forward to the intrusions (I'm pretty introverted and I need quiet time or I get over-stimulated, overwhelmed, irritable and depressed). I want to be the best me I can be right now, because I know my state of mind affects the care my mom gets from me...I don't want her stressed because I'm stressed...I guess my goal is just to manage my expectations and try to find a few pointers to keep myself from breaking down.
The nurse will come in to check vitals and then leave. And bath Aide would come in to bathe Mom and then leave. A volunteer might stop by a couple times a week to talk to Mom, read her a book, or just hold her hand but that would be only a half hour or so, depending on her schedule. Clergy might stop by but that could be only once or twice. You can call Hospice 24 hours a day if you have any questions.
Otherwise the rest of the time and help would need to be provided by the family or if you hire a caregiver for a few hours during the day.
I had Hospice for my very elderly Mom but she was living in long-term-care where she had help from the facility along with Hospice.
As for visitors, thats up to you. Your Mom will need much rest, especially since she is probably struggling to breathe, and I recommend that you keep a tight schedule! I hope you have family members who will be able to come in and put in caring "shifts" , to give you a break, because you will need it! It's exhausting! Try if you can, to have a schedule where family will commit, to coming in for 3-4 hour stretches, and allow other visitors, only when its convenient for you, and keep it to short, 1/2 hour visits per day max, or you will feel like a short order cook, if you don't already! Be honest and forthright with your needs! If people offer food type items, and dinners for your family, say "Oh Thank You Yes"! Ask family to please bring in deserts and pickies, these things Will be eaten by guests! You will find that the coffee and tea and snacks are a constant, if you think that a lot of visitors will be coming in, having them handy and easily accessible will make your life so much easier! Anytime someone Asks if they can help, PUT THEM TO WORK! Be ever so grateful and say Yes! Then send them off to pick things up from the store, and have some Petty Cash available, put them to work in the kitchen but do say yes, if you don't right from the beginning, they will stop asking!
Your Hospice will be providing an Emergency Medicine Kit to have close at hand, in case your Mom becomes agitated, severely distressed, unable breathe, or other scenario that the Nurses will go over with you. The kit will probably contain fast acting anti-anxiety meds, pain meds and such. Please put this someplace very safe, and away from people who might snoop in side tables and such. Maybe in your own bedroom away from your Mom's room. That way there will be nobody walking off with important supplies, so that they are there when you need them!
Hospice will supply you with all sorts of disposable medical supplies, gloves, bandages if nessesary, skin creams, barrier creams, and such. Have a drawer in her room ready for this sort of thing.
Also, controlled meds, valuables, yours, hers, lock those away. Just as a precaution. I know from experience, that we had So many guests wanting to visit, you just never know. It was only a problem one time, but still!
The only other thing, think about having your Mom in a Hospice Hospital, if having her in your home proves too much for you! It is a lot of work, and you can always spend as much time with her as you want, if she is in a nice Hospice unit! Our Mom was home, in my sisters home for 5 & 1/2 months, and the last 8 days, in a Hospice specific Hospital setting, they were incredible!
The head Nurse approached my sister at home, and told her that my Mom was ACTIVELY DYING. This was something that we as her kids did not pick up on, and we we with her every day! There were subtle changes in Mom's metal status, and other things, that we didn't see, as we were always there with her. The other thing, are you prepared, to have your Mom dying in your home. Sometimes I think that we think we are, but when it comes right down to it, we may not be. Not because we don't want to, but because it can be scary. For this reason, and because it was recommended, we had our Mom transfered by Cabulance, and she was very comfortable in a private room, and one of us kids stayed with her every nite on the couch. After 3 days, our Mom slipped into a deep sleep, and food and drink was no longer an option, but not advised. We kept her mouth moist, with swabs, and we turned her every 2 hours, and having the Nursing staff right there made us feel so much better! Just keep it in the back of your mind, if it is an option. But definitely investigate whether or not it is a Better Option for You! And don't feel like you are disappointing her if that is the best option! These decisions are Tough! I come from a big family, and we were all helping! God bless!
Another thing, some patients like having the whole family around them on the last day.... others prefer to pass when no one is in the room, as they don't want to hear the family be upset. We never know until the final day, so don't feel guilty if you are out of the room when Mom passes.
Hospice was able to tell me within a certain time frame when to expect my Mom to transition, so I stayed with my Mom in long-term-care so she wouldn't be alone as she never liked to be by herself. It was in the wee hours of morning and I was channel surfing and found Mom's all time favorite movie "Smokey & the Bandit" so I watched it.... the movie ended at 3:00 a.m. and my Mom passed at 3:05 a.m.... it was like she stayed with me to "see" the movie until it finished, even though Mom was in a full coma.