We're getting ready for home hospice. How am I going to cope with all the visitors and interruptions?

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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.

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From what I was told, there was not a hospice hospital option unless we were to self-pay to put her in a nursing home (funds are very limited). They do have a short term place to manage uncontrollable symptoms related to their illness, and I think perhaps up to 5 days of respite. She did WAY better than expected when they took her off the high-flow, and they have her on 6 liters now. They wanted to send her home on hospice TODAY and I just looked at them like they were crazy! I have to switch her and my son's room, get a hospital bed and equipment delivered and installed, move a ton of furniture and crap around...we bargained as much as we could and got them to keep her in the hospital til Sunday. Pam, they won't keep her...obviously. I wish that were an option...she got treated like a queen there, as the nurses all love her. She's chipper and witty and chatty and none of their other patients are, so they visit her often. This rollercoaster is killing me and I have spent all day in the hospital with her, and meetings all day with respiratory and doctors and hospice people, and then had to come home and move a bunch of heavy stuff all night. I'm going to TRY to see if I can get someone to come in soon after she gets settled, just so I can have a couple days's rest. I just can't believe how her condition changes so rapidly and how one minute she's near death, and the next minute she's telling jokes and talking politics. I feel like I have PTSD! sigh...thanks for listening to me whine, y'all. Just getting if off my chest helps. Stacey, good tips on the meds, I do know a few people who would try to avail themselves of an opportunity if they could. I don't think we'll have as many visitors as you did (we're not members of a church and mom is pretty solitary usually), but wow, would food be welcome. Bright spot in the day, my 19 year old daughter came over and fixed us dinner! She won't be around too much cuz she's working nearly full time and going to college nights, but it sure was good to see her. What I wish is that we just had time to put one of our 2 old dogs down. He has bladder cancer and he's messing in the house daily now and hurting but still wags and eats...hard to know what to do there. We can't even schedule his trip over the rainbow bridge, poor baby. I don't even know what is holding me together right now.
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amicable, I know this is hard on you as we would like to keep our parents forever. Here is one thing to make note and to tell visitors... when your Mom is in a sleep like coma it is my understanding that she can still hear what is going on around here, so it is best that everyone watches what they say.

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.
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Having personally been through the Amazing assistance from Hospice, when our Mom was dying from Cancer, the above posters are all correct, after the initial intake, setting up of equipment, and Nursing and social worker visits, the clergy, if you wish to have them in, they will probably come from your home church or can be arranged through the Hospice. Then the twice weekly visits from the bath aide will be on her rotational daytime schedule. You will see Nurses more frequently if your Mom is bedbound and has a catheter that needs changing every 10-14 days, or IV medications that need medication refills and occasionally have line plugging problems, otherwise probably only quick visits 1-2 x per week. An aide or additional help with light housekeeping and errands might be something that you need to request, and other services perhaps, depending on your Hospice group and if they have those types of services, make use of them, as they are part of your support system!

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!
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amicable, with all you have going on at home, I think it will be less stressful if she stays in the hospital. Hospice does not provide 24 hr nursing care, just a daily nurse visit. Been there. Once the oxygen is turned off, it will happen pretty quickly. Not enough time to transport anywhere.
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I can't thank you all enough for your input and advice. Today's update from the doctors hint that the journey to home, at home, may not pan out after all and the end is a bit nearer than we originally thought, but if it changes, it is really a help to know what to expect. Hugs to you all for taking the time to post, truly.
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Im sorry your going through this. My experience with home hospice is that the first 2 days are very busy. The intake nurse will come and it was a process that lasted about 4 hours. You will need to make some very difficult decisions which include looking at a med list and deciding if you want to remove the patient from any of them, there will be an evaluation of services and a bunch of question and answers. The second day, there will be a social worker, clergy and deliveries of additional equipment and medications. After that, you are pretty much on your own in terms of caring for the individual. You are going to welcome people coming in to give you a break. It is very exhausting and from experience, I am kind of a wuss and it was difficult to watch. There will be nurses on call 24/7 but they only show up if there is an emergency.
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amicable, I suggest you check with Hospice and see what is their schedule. I really don't believe they will be in and out at all hours. The staff tends to work only during the day going from one Hospice patient to another and another.

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.
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I rather doubt that there will be "nurses and aides in and out at all hours", I think you are overestimating the amount of care hospice will give you. I have followed other poster's journey with their parents in hospice care and I have learned you will get aides for bathing and other help, but at best you will have a few hours a week. A nurse will be available on call 24/7, but you will probably not see her often. And all the rest, clergy, social worker, may visit but you don't need to let them inconvenience you if they show up unexpectedly. The same goes for family, if you have sibs that will blend in unobtrusively and lend a hand you might welcome them in your home but otherwise feel free to direct them to the nearest motel or B&B, the last thing you need is family drama. ((hugs)) Take care of yourself.
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