In-Home Hospice

I have not been there directly myself (not in my home) but from experiences with friends, I will say that hospice is also there FOR YOU, the family. Lean on them. Let them help you, too. Hugs for you.

You need to have a lot of help and moral support of friends and family. My Mom was on in-home hospice for almost 8 months before she passed December 19th. She came home from the hospital April 27 and I had to be homebound with her. I went out with friends on Memorial Day weekend and had an event I had to be at July 23. My kids were able to come in and care for Mom on those days. Other than that the only time I left was to take my son to work and basic errands. I missed my grandchildrens' birthday parties and wasn't able to do anything for my kids birthdays. I am the only surviving child of my parents. I have 4 kids but they all have kids and were unable to come in for more than a few hours at a time. My sleep patterns got totally messed up. Some nights Mom would need help to go to the bathroom every hour to hour and a half and I had to get up with her. Many days I survived on 2-3 hours sleep for a week or more at a time. Many nights I need someone to be here with my Mom so I could go somewhere and sleep. But my daughter's were too busy and mom didn't want my son's helping her go to the bathroom (understandable).

I couldn't even mow my lawn unless someone was in the house with my Mom. I couldn't go sit outside and enjoy the summer or weed my flower beds.

Hospice care workers are in the home 1-2 hours a day and I could leave to mow the lawn or pick up her prescriptions. In the beginning they were here 3 days a week and other than that I was on my own. I had to change hospice services about midway through this ordeal because the first service was really not dependable and I had to run my house by 'their rules'. I have dogs and my dogs are barkers but they leave people alone once they are in the house. But hospice rules they had to be 'put away'. At fiirst I would put them in my room and close the door but after a while the dogs didn't like that and peed on my bed and made a mess in the room. They normally don't pee in the house. They could never keep a schedule and would just show up. We requested that they come between 11 AM and 1 PM and I had a CNA show up at 8:30 AM--remember no sleep. They often had a different CNA show up and I don't know how your dad is but most elderly people don't want to get naked and have a shower with a stranger all the time.
The second hospice service I hired was so different they loved my dogs and would play with them. They always had the same person, unless there was an emergency. The CNA and RN were always cheerful and caring. In fact my puppy hurt her foot and both the CNA and the RN looked at it and the RN made a call to her Mom who has a lot of experience with dogs and advised me what to do. I would have given the puppy ibuprofen only to find out that it's deadly for dogs but asprin is okay.

Your siblings and kids will tell you they will be there for you and relieve you once a week -- but they won't. If you take this on you will often be on your own. Even friends stop calling because they get busy.

Would I do it again? If the case is like this I would have to; mom bought this house after she divorced my dad it's completely paid for and of course I inherit. It's an older home that was remodeled into an upper/lower duplex; we moved in in Nov of '01. At that time my Mom was able to do some self care and drive. Within a year she couldn't drive anymore due to her vision. I was happy to make dinner every night and include my mom and do her laundry and cleaning and do all the yard work. It is my house too. I tried to convince her to take out long term care insurance or sign the deed to the house over to me so that in the event she needed 24 hour care or a nursing home I could continue to work and live my life. But she refused. When a patient enters a nursing home the home attaches all assets and then sells the home after the patient passes to pay their expenses. So unless I could take out a mortgage and pay for the house I could have ended up homeless.
As my Mom aged and her health deteriorated my world became smaller and smaller. I couldn't enjoy my days off (when I was working) because I was taking care of Mom, I had difficulty even working or spending time with friends because my Mom could not even heat a cup of coffee, in the microwave much less make a bowl of cereal, the last almost 5 yrs . If I wanted to be gone for even a few hours I always had to make sure someone else would be here. I spent the better part of 10 years taking care of my Mom and working low income jobs so my schedule could be flexible.

Read the book Final Gifts. This book helped me when both my father-in-law and best friend died. It won't help with the practical stuff but it will help with the emotional/psychological stuff.

I am sorry your family is going through this.

Hospice is a wonderful program. My grandmother was on hospice care at the time of her death (she had ALS) and my mother is now a hospice care nurse. Hospice's goal is to provide pain management and to make passing as peaceful and easy as possible for both the patient and their family members. Hospice workers will go out of their way to adhere to the patient's and family's wishes and personal care plan and to work with the primary care giver (usually a relative). A lot of people are not aware that hospice offers counseling options. I wish more people would take advantage of the pre and post death counseling available through hospice.

Best wishes.

Sadly, I have quite a bit of experience with Hospice. My Mom just passed last Feb. six months after being diagnosed with an untreatable form of cancer. She never entered the hospital and died at home with a lot of help from Hospice.
I cannot say enough positive things about the hospice program and it's people. From the nurses, counselors, managers right down to the administrative people who answer the phones they are all so supportive, sweet, knowledgeable and honest. They will not hold back so be ready for some very honest discussions about the process your Father is entering into. They were there for us 24/7 for anything we needed, even if it was just to listen.
Make sure you have a lot of help from family/friends. There will be meetings at least weekly with a hospice nurse and just caring for someone in your Dad's position is a 24 hour job. We lived next door to my Mom so it made it easy to be there in that way but had no family close so it was up to my husband, myself and my two girls 8 & 12 at the time. It is overwhelming and scary at times but my family all agrees we would not trade those last months with my Mom for anything. It's worth all the pain and work to have those moments of peace and connection with the person you love.
The hospice people will tell you to take care of yourself. Be sure that whoever is the main caregiver has breaks, lots of support and help. If it's your Mom and she's elderly she's going to need a ton of physical and emotional support. Family members may check-out. My brother just about disappeared the last several weeks of my Mom's life. My family just looks at that as his loss, we all feel blessed and very, very lucky to have been able to be there with her during her final days, no matter how hard it was.
Finally, not sure how old the children in this situation are but we did not sheild our girls from much of it. They rose to the occasion and were so mature and insightful. We talked about it every step of the way and spoke as a family with the Hospice counselor. I know my oldest especially will remember how she was there for her Grandma in her final days just like her Grandma had been there for her entire life.
I'm so sorry for your situation but you could not be in better hands, from our experience. Blessings to you and your family.

my husband died slowly at 32. he was the love of my life and sad to say i handled it horribly. hospice was the best. no matter how uncooperative and beligerant i was they took it all in stride and were always there for me. i was a mess and still they were gentle and kind. i have so much gratitude for them. they never showed me in any way that i was being anything but ok even though i knew i wasnt. i dont think i will ever as long as i live feel as much respect for a whole organization as i do hospice and this was 19 years ago
also, be prepared. dying at home is visual and hard. i know we should face death better as it is inevitable but it is very hard to literally watch a person you love die.
my heart goes out to you.

Hospice came to our home, where my parents had moved so I could help my mother care for my dad when he was dying with colon cancer. They were very good with him and tried to make him comfortable but also good with the family. I home schooled at that time and they included our children in the process and although we already were including them, she told them that death is part of living and nothing to be afraid of. My dad already had that view so it was a very sad, but very helpful time for us. I think the compassion they show is what is most needed at a time like that.

being placed in hospice can be a gift. You are aware that the end is near and have the opportunity to cherish the last amout of time with your loved one. I had one grandmother who was in hospice for about 2 weeks. She was completely alert and of sound mind. She actually planned her funeral. Told us who she wanted to speak, who she wanted to sing, what she wanted sung. DO NOT ignore the elephant in the room, that this person is going to die. Take the opportunity to record stories about his life. Record his voice if at all possible. be with him. reminice. My other grandma was in in-home hospice for 2 months. In october she had been given hours to live and she made it up until a week before christmas. Although with her she had had a stroke 10 years prior and by this time she was unable to speak. However we had time (that many of us took advantage of) to go and just be with her and visit around her. She knew she was loved and that we would undoubtably miss her but that she could go when she was ready. We did not want her to suffer anymore. Best of luck to your family. Soak up all you can in this time.

Everything RevRuby says is 100% true! We had hospice for my sister at my dad's house. They were wonderful! The hospital had it all set up before we got her home.
Their best interest is for the patient. The one we had also had a hospital in the area. Because we had issues in our relationships with our dad and his family, the drama it caused was too stressfull for my sister and she was admitted.
All in all it was a good experience. I would be willing to work with them again if it comes up. They do help with the steps to death for each member of the family at the level of understanding.
Good luck!! and GOD BLESS!
D.

I have just about a daily dealing with hospice with my job at the area hospital. And I have personal experience with one of my grandfathers and one grandma. I will start at some points this might be to TMI to take.
At work they are the most caring and thoughtful staff we have. They are totally there for the patients comfort. They are never afraid to answer a question that any family members may have and if they don't have an answer they will work until they get you one.
On an out patient experience even though I have medical background was still hard emotionally. My grandpa diagnosis was neck and throat cancer and he had about 3-6months his oncologist told me. At 3 months he started having trouble talking due to the tumor pushing against his vocal cords. I had hospice started at 2 months post diagnosis. They came in and checked him everyday. A week later he started having seizures due to the cancer had spread up to his brain. We kept him at home until no one could safely care for him since it is family that has to do it. Even with the meds they do provide for you and all the equipment it wasn't safe. They made the transfer to the hospital seamless. At that point he was an inpatient. Same caring manner cared over from outpatient. In the hospital they were able to do a continuous morphine drip which wasn't able to be done at home. Within 6 hours of my grandpas transfer the equipment was gone from my grandmas house so she wouldn't have to worry about it. He passed peacefully a couple days later.
My grandma had lung cancer and we brought in hospice about 2 or 3 months before her passing. She was all the way in E.Wa with a different hospice company. Here again they were wonderful. Since it was just her and my grandpa for the most part until just week before her passing the nurses checked on them daily. My aunt showed up to help on Wednesday and the RN did an check of my gram and said due to the quick progression this would probably be her last weekend with us. My gram was still up talking and walking at that point. Not much but still able to be mobile with assistance. She was put on morphine and lorazapam to help with anxiety and pain. It really is at families digression on how much is to be given towards the end. Sometimes a person before they pass their body kind of gets worried and anxious and needs a little help to calm down. The meds go under the tongue since they are liquid and will absorb quickly. Don't be afraid if you feel something isn't right to do something about it. Your dads respiration rate will tell you a lot more than a lot of things. A normal not stressed person will breath anywhere from 16-20 times a min. if you get into the high 20's your body while going though this is saying ok I am not comfortable. Even if the patient looks find and the respiration's are elevated it is a sign to give more meds. That is what we go by mostly in the hospital. Also another thing you might notice is the body can get really really hot. Some people do it some don't. Cool wash clothes can help but more than anything it is to help you feel you are doing something. If your dad starts to sound wet when he is breathing ask for something weather it be a under the tongue tab or atropine drops or a patch. He still might sound wet but he wont be bothered by it usually. Also the color of the feet and legs can become more purple or bluish as things progress since its the body's natural response to keep the blood in the trunk region to save energy.
I know you said renal failure and depending and if he is still producing urine or not you might as for a foley cath to be placed so you won't have to turn and clean him up. Some people still produce urine until a few hours before. My grandma did and she was stage 4 as well. If no foley catheter is placed ask for depends they can provide so if he is incontinent at anytime it is easy clean up. Get some baby wipes also they are great for that. Ask for toothettes or sponges for his mouth that way you can keep it moist in there. A lot of people like to suck on them even when they are past the point of realizing what they are doing. Kind of the same suck response a baby might have. The last thing is the hospice staff is there to help you with anything you think you might need. If you have questions they have someone on call 24hours a day. If you feel a nurse needs to come to take a look don't be afraid to call. That is what they are there for. The hospice team are all a bunch of people that have a calling I believe to do this specialized thing. Just like some nurses are for delivering babies some can some can't do it.
I hope this goes smoothly as possible. God bless

Hospice is wonderful!! 5 years ago, my Dad came home from the hospital shortly after Christmas on Hospice. (He had cancer) Things were really bad. They made his last weeks comfortable and he was able to be at home with (us) his family. It isn't easy knowing that the end is approaching. God Bless you and your family.

One thing (the only thing) we didn't like...they didn't come and take all of the medical items (hospital bed, walker, portable toilet, etc) shortly after he passed. We had to call them finally and tell them to come get it. Maybe that is how it works, but I wish we had requested right away. That is the last thing I wanted to look at.

I am so sorry for what you are going through.
I am a hospice volunteer and our program here is awesome! I think you will be very pleased.

ASK QUESTIONS!! There are so many questions I didn't ask my grandmother who lived with us when I was in highschool. We were very close but there are still so many things I'd love to have heard about that were probably trivial to her. What did she love most about my grandfather? What was it really like to grow up in the 20's? What was my mother like as a child? The year she was born nobody had a car. Everybody rode a horse or a buggy! The day she died the whole world was on the internet. Wow...what must she have thought about that! Have your dad tell you things about your mother or how they felt when you were born. I've been lucky with my Dad's mom because I have asked her so many of these questions. Even though the things are trivial they paint you a picture of their life and give you a window to who they truely 'are'. My sisters and I joke because none of us ever got a vacuum that without my (mom's side) grandmother's 'approval'. It's a silly thing but I can hear her voice clear as a bell telling me to get an electrolux...I don't even know if they still make them! Why that sticks out don't know but I never pass them at Wal-Mart with out thinking of her like she's just a phone call away. If he's up to it have him write a letter to your grown up kids. My grandmother has done that for my son (he's 4) and he may never appreciate her as much as I do but I love the fact that he's got a connection to someone I love so much. Have him write a letter to you too so when you are having a 'I need my daddy' moment you can read his praise and encouragement.

Hello,
I am sorry you and your family is going through this difficult time. I don't have any personal experience with hospice but I am a nursing student and what I can tell you is that the hospice nurses are the best in the business. Alot of them go into hospice after their career working in the hospital and they are very trained and specialized. Everyone that I know that has had hospice care for their loved ones had a good experience.
I would like to say that in my experience, and from what I've heard, it is the families that have a spiritual side that have an easier transition with sickness and death. God bless you and your dad and your family, C

We had Hospice for my Dad in his final days. They are wonderful. I had never had any experience either and everyone that came (from the nurse to the social worker) made me feel that I could call them at any time if I ever had any questions or needed anything. And I did make several calls to his nurse as I was the only one with him when she wasn't there. She never acted like it was a problem and even helped me get him back into the hospital when it got to be too much for me.
Sorry you are going through this, I will say a prayer for you and your family.

My heart goes out to you and I wish you comfort. Everything I have experienced with Hospice has been positive and loving. My dad wanted to reminisce about things we had done together which was both pleasant and melancholy for me. I took pictures of the wrinkles by his eyes (my favorite place to look when he laughed) and of his hands (that held me as child and helped me as an adult). (((hugs)))

My Mom who had been completely healthy and on no meds at 89 tripped on her walker on the way to my neices graduation party and over then next several weeks after surgery (broken hip) just was failing. All she wanted was to "go home". We agreed to bring her to her home and have hospice come in. We used Vitas..they were wonderful!!! My suggestion to you is to get a Hospice service you like and make sure you have support. You will need a break at times..it is so draining. Make time for yourself..call on onther family members to come and give you that break...good luck to you. Oh..in retrospect...I would do it again. My Mom lived about a month..most of the time she was heavily on pain meds..but had several episodes of absolute clarity and would tell my sister and I that she had a great life..was ready to go..and although at the time it was hard, I know it was the right thing to do.
Hugs.....

Updated

My Mom who had been completely healthy and on no meds at 89 tripped on her walker on the way to my neices graduation party and over then next several weeks after surgery (broken hip) just was failing. All she wanted was to "go home". We agreed to bring her to her home and have hospice come in. We used Vitas..they were wonderful!!! My suggestion to you is to get a Hospice service you like and make sure you have support. You will need a break at times..it is so draining. Make time for yourself..call on onther family members to come and give you that break...good luck to you. Oh..in retrospect...I would do it again. My Mom lived about a month..most of the time she was heavily on pain meds..but had several episodes of absolute clarity and would tell my sister and I that she had a great life..was ready to go..and although at the time it was hard, I know it was the right thing to do.
Hugs.....

When my friend's husband was dying, I consulted a hospice that my friend and I do work with to figure out how I could help. What I took away from that conversation was "be the best *you* you can be." I know our situations aren't the same, but it seems to me that the advice might work for you, too. Just be the you your father knows and loves. Be as pleasant as you can. It's okay to see the humor and to laugh just as much as it is to cry.

To piggyback on another person's comment, definitely make sure that the hospice workers who come to see your dad are a good fit. Don't be afraid to request someone else if you need to. My friend had to do that, but was glad to have spoken up.

Much love.

Well, I worked in hospice once upon a time and although everyone here says hospice nurses are such a blessing, it is because we are blessed to BE hospice nurses! Our priorities as a hospice nurse are usually extremely clear - to facilitate a "good death" - and the patient and family usually decides what that is. It may be to control pain, or preserve dignity or some particular function, or just help the family prepare physically and emotionally for the inevitable. In any case, we will do all we can to make sure that YOUR vision gets realized. Our mission isn't clouded by trying to perform some impossible medical/legal balancing act (see today's leading Mamasource article where a mom is exasperated because the doc inconvenienced her by ensuring her child's health through what, thankfully, turned out to be an unnecessary admission. Article has good points, the example was poor however since the docs were TOTALLY in the right in that case.)
To give you a mental image of how I view hospice nursing, imagine a really slippery winter road. Your hospice nurse is like your studded snow tires. There will still be times when things feel like they are out of your control (some things are!) but your tires will eventually find the traction, help get you back on track, and get you through. However, you need to USE the tires! Be very up front with your nurse about goals, fears, questions, etc. They can't really help if they don't know what you want/need. If you haven't already met with her/him, it might be worth it to brainstorm (either individually or as a family) how you would like this time with your dad to look, what questions you have, (no matter how silly you might think they are!) and what really scares you about facing this time. (Some family members may need to speak to the nurse/ chaplain individually. That's okay, too.) Remember, your family is in charge so, ideally, you need to build the vision for your nurse to help you create it.
Hope this helps. Best wishes for a uniquely special time with your dad.