Hospice Diary for my Mom
Comments
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I came here six or seven months ago looking for information on what to expect during my Mom's fight with Stage IV breast cancer after her decision to cease chemo. Cancer has been in our life for so long I feel like it's the new normal. But now -- at the end -- I have no idea what to expect. I feel there are a lot of people like me -- trying to see how things will be when we can do nothing else but pray and cope. I am currently in "cope" mode. My Mom entered hospice just before Christmas. I have watched her go from bad to worse but I know there is peace ahead. It is well with her soul. I really just wanted to start a thread where I can let those who want to know.... what Hospice is and what it does for them or their loved ones........KNOW. So this will be for my Mom-- and ultimately I hope it helps others in their journey.
I will start by saying Hospice is a good thing. It gives my mother care in a home environment--- which is what I want for her. She is living with me and I intend to keep her here with me until the end. I know it won't be easy but she deserves the love and dignity we can give her. She would do it for me if the shoe were on the other foot. I feel honored that she is sharing this time with me as it is very personal. Dying is personal.
Here are the things I have learned so far:
- Hospice is not on a schedule. If you are expecting them to come at the same time on the same day-- it's not going to happen.
- Your house will be covered from one end to the other with durable medical equipment. So far in my house we have an oxygen concentrator (large) , 3 large bottles of oxygen in case of power outages, portable oxygen tank system for trips out of the house, walker with seat, rolling tray table (like the ones in hospitals but smaller), elevated potty seat with rails, bed side commode, wheel chair.
- Your fridge will contain drugs you never thought you would have in your house like Morphine and other pain killers.
- The nurses are upbeat and very sweet despite what must be a heart wrenching job.
- You will sometimes feel alone and the gravity of what is happening will get you down... but then you will share an unexpected laugh or story with your loved one that makes you forget for awhile.
On my next post I will tell you where my mom is medically. Right now she is calling me to help her get into bed. Gotta Go!
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Welcome to being an active poster on BCO and our best to your mother. She is very lucky to have such a caring person as you. From the profile, we can see it has been a long journey for both of you.
Your intentions are admirable as it is entering a very strange and unknown stage of care, and your posts may help others who are seeing hospice style care for a loved one as a possibility.
Keep your spirits up and know that we are thinking of you both.
The Mods
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Hospice is amazing. My mom died of Pancreatic cancer three years ago at home. My siblings and I (three of us are nurses) took shifts with the rest of our sibs and took care of her at home but the Hospice nurse was amazing. When my mom chose no Chemo after she metastisized ( she was lucky to be able to have surgery but metastized anyway), we got them in early, while she was still feeling well. That's the key. A plan was hatched with her calling all of the shots. The nurses are excellent at pain control. I sometimes feel they're better than pain management specialists. I know it's not for everyone to have a loved one die at home but thanks to Hospice my mother lived 2 full years of life after metastisis, with only the last two months when she slowly declined. She had as perfect a death as one could have because of Hospice. I pray that the end of your mothers life is as beautiful and peaceful as my mothers was. It's a real gift your giving to her and to yourself by having her with you. We still laugh at alot of things that happened with her during those last two months! I wouldn't change that for the world! No regrets.
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Kamm....thank you for your insight to Hospice care. It gives me some inner peace. Sometimes I think I'm inadequate and maybe she would be better in a facility... but then I read posts like yours and know I can do it -- I too want no regrets.
My mom found out she had Mets about 3 years post, what seemed at the time, a close call with breast cancer. We were told surgery got it all and it had not affected her lymph nodes. She only had a lumpectomy and thereafter, radiation. We had a false sense of having beat cancer. Until 3 years later when her back was hurting and we were naive enough to think she had hurt it in the school cafeteria where she worked. Cancer never crossed our minds.Turned out to be mets to the bone. A PET showed mets to the liver, bones and lungs. She moved from Florida to Atlanta with me-- where we sent her to Emory Winship for chemo. She tried various types of chemo, none of which arrested the aggressive bone cancer. She was put on oral chemo which made her so sick and weak ...after no appreciable remission-- that she elected to stop all treatment and moved back home to Florida.
That was March 2014. Currently she has two pleural catheters (lt and rt) we drain fluid from every 3 days. She now has mets to the brain with double vision and vertigo. She is getting weaker and her legs can't really get her up from a sitting position. We have to help her up. She can ambulate with a walker once she is up. She doesn't really feel like getting out. She is on oxygen full time and taking .5ml of morphine at night to sleep. It helps alleviate coughing which keeps her awake. It's difficult to see her like this. The bright light is Hospice. They make you feel not so alone. They are honest and frank but we need to know.
Our nurse comes one to two times per week currently. She spends a good hour or more with my mom each time talking and assessing her. She thinks my mom will make it to spring. My mom has a lot of willpower but is tired much of the time now. She is still awake more than asleep. She still eats pretty good as she is on prednisone for the brain mets. She is down to 111 lbs --- down about 6 lbs from a few weeks ago despite eating really good. I am considering inquiring about a hospital bed as she seems to be having problems getting up and down from the regular bed. She insists she doesn't want one so I don't push it. It's her decision. Of all things --- constipation has been one of the biggest problems for her... she obsesses about it and for good reason! We have about 3-4 Rx's for just that so I am guessing it is a big problem for many people in a Hospice situation. We have some pretty good "poop" stories already.
We call Lactalose "poop potion #9" and laugh about it every night when she takes it. I will keep posting so others will know what to expect. I don't fully know but I pray it is peaceful. Death is natural-- we will all go there. I feel differently about it than I used to. Life is beautiful and I wish my mom could remain with us years more...but if this is it I want it to be as painless and dignified as possible.
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I resinate with so much of what you say! We also felt inadequate at times even though three of us are nurses. We all agreed it was the hardest thing we have ever done but also the most rewarding. My advice is def get the hospital bed. My mother also didn't want the hospital bed but as you said it gets very difficult to get them up and down as they become weaker and the hospital bed is a huge help. In fact we just moved my parents bed over in the room and butted the hospital bed right up to it so we all could sleep right next to her! My dad too! We would lay with her all the time just to watch TV or just talk and laugh about the past. You can raise and lower the whole bed and the head of the bed goes up and down. Have the nurse show you the differnt technques for getting her in and out, sliding her up and down. Once she is in the bed she will also see the value for herself and how much easier it is for her as well. Thank you for this post because the anniversary of my moms death is Feb 20th and although it wasn't the best time of my life it really brings back alot of really good memories of that time, alot of laughing, ALOT of visitors in and out of the house, ( 400 people at her funeral), crazy right? I think if you can do it, it is the greatest gift you can give to them and to yourself. Hang in there! It'll be well worth it in the end, for both of you. I'm sending you a hug. Wish I could do more.
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MomsKeeper, my dad passed way in 1998. He still lived in the house where my 6 siblings and I grew up. We kids were all adults, none of us had lived there in many years. Dad lived less than a month after his leukemia diagnosis and during that time, hospice came to his house.
None of us had ever experienced people like that before. Dad's nurse was about his age, early 70's, who was amazing: competent, confident, caring. We all drew strength from her. Several aides came during Dad's last weeks to assist with personal hygiene, helping him wash, changing his pajamas, changing the bedsheets. Even tho we kids took turns around all our busy schedules to be with Dad, having hospice personnel coming to the house made us feel less alone. Not only did it help Dad, but it helped all of us to know that other people were supportive of us. Tho it was 17 years ago, I can remember it like it was yesterday.
I agree with kamm about getting a hospital bed. Perhaps your mom would consent to have one put in a spare room until she gets used to the idea. She can have her own sheets, blankets and pillows on it to make it comfy and feel much less like a piece of medical equipment. The bed does all the lifting and can make you so much more comfortable.
Your mom is blessed to have such a caring daughter by her side to be with her at this time. Those are not just pretty words I'm typing. It is the truth. To have someone who loves you and is there at your greatest time of need is a blessing.
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Divine and Kamm--- this is why I joined the board. In these times we all need encouragement and we all have something to give. Thank you for caring enough to tell me your story and give us encouragement. I hope I can do the same one day.
Last night -- for the first time I know of-- my mom complained of a headache. That really worried me because I see posts where brain mets can cause personality changes and additional pain. Mom is on 2mg of prednisone every 8 hours and that seems to be helping. She was on higher doses-- and did not have the psychosis -- but had a really hard time sleeping and she was swelling up and looking really flushed. I am glad they lowered it. She is up now drinking coffee in front of the fire. :0 We used to worry her oxygen would blow our house up --- now we don't even think about it!! LOL SO funny how this crazy disease makes things seems so normal when they are actually far from normal. Last night we watched Hallmark TV. I have never watched so much Hallmark TV in my life... my mom LOVES it.
Today the CNA from Hospice comes and will give my mom a shower. Which is nice. I can do it-- and actually did it Monday -- but its nice to to have a helping hand. Another surprise from Hospice is a "sitter" or Hospice volunteer who is coming tomorrow to sit for an hour or two with my mom so I can run to the grocery store. I never knew this was available-- they just called me and asked me if I would like an hour or two a week to run errands. Hospice is wonderful!
I am going to take your advice on the hospital bed. I talked to mom about it last night and she seemed mildly intrigued but not excited. LOL I think she feels it's giving up. I think it will make things easier for her and will encourage her to ask for it. I try not to take over because it is her decision. It's fine line!
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Hahaha about Hallmark! For my mom it was Frazier and Project Runway of all things! Every day, every night! That was one of our jokes with my dad! If I never saw Project Runway again it would have been to soon! Just as an interesting side note, we also think she potentially had a visitation from someone we could not see but she could! She asked my dad if he could see someone standing by her bed. Just about three days before she died. Interesting and comforting in a way!
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My mom is getting old and is not real well. She asked for a hospital bed after her last stay in a skilled nursing facility. We got her one and she loves it - it has her own sheets, quilt, etc. but it's great because it allows her to sit up and read in bed, to have her feet elevated, it's low enough that she can get out of bed easily. Maybe you can try to sell your mom on those points. It's been a real help. You're a wonderful daughter. Take care.
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Over the last week my mom has started retaining fluid in her tummy area. This is really unfortunate and distressing because she already has 2 catheters in the pleural lining of her lungs that we drain every three days. Hospice said they can't put a drain in to the tummy-- obviously-- but they will give her medications to try and stop the ascites. She had a bad few days with breathing and we had to up her oxygen to 3 for the first time. Still taking off 800-1000ml of fluid form each lung every three days.
I do notice a general decline in her ability to get up. She has pretty much stopped using the regular potty and is using her bedside potty exclusively. I am really glad we have it as it keeps her from walking too far... which wipes her out. She is having a lot of trouble holding urine and is becoming incontinent. She says when she stands up she suddenly realizes she has to go but doesn't have time to get to the bedside toilet. She wears panty liner things for that -- so it's been fine. She is telling me her back feels weak-- and she can't hold her trunk up for long periods of time -- and her ability to standup from shorter seats -- like the recliner and the shower chair--- are getting tough. I am guessing this is all part of her muscle wasting.
I hate seeing this decline but I understand why it is happening. She is still in fairly good spirits. She is sleeping more. Hospice is coming Wednesday to evaluate again. Still no pain... which we are SO THANKFUL for. It's just amazing that she does not have more pain. Although when I was rubbing her legs with lotion she told me her ankles are really sore -- to the point she jumped ( and also very swollen) not sure why that is. ?? I'll ask the Nurse and post it.
That is it for today!
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Thanks for the update. Sounds like she's hanging in there. Make sure you are taking care of yourself too!
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I just realized its been almost 2 weeks since I posted an update. Time flies no matter the circumstances.
The Hospice RN came two times last week to check on my mom. She saw her on Wednesday and diagnosed worsening ascites. It is now creeping around to her back and also in the thighs. You can almost see where it stops because my mom is so thin from weight loss. The fluid is about to her diaphram and as a result she has very little air circulation in her lower lungs. In the upper lungs she has pretty good air circulation. We tried a 3 day stint if 40Mg of Lasix and that did nothing to reduce the swelling. At the same time she was on the increased lassie she was prescribed Potassium to offset the chemical reaction of the Lasix.
We were able to talk my mom into a hospital bed-- in fact it was really her idea -- we just put the seed there.
I think it will make things easier. The bed is to be delivered today and will have an air mattress that kind of waves to avoid pressure sores. I am interested to see what that is about. I'll post a picture later. Mom's room looks like a hospital room -- all kinds of equipment in there. We're thankful for it-- it makes life so much easier. I can't imagine having to buy all this stuff to make my mom comfortable. The RN came again on Friday (13th)- they had to take her off the 40mg of Lasix because it was not working and could cause kidney failure -- so it was stopped. I was able to get my mom in the shower yesterday but she is so winded. She can walk about 5 steps and then has to sit on her walker (has a bench seat in it-- another awesome piece of durable medical equipment offered by Hospice) After a rest of about 3-4 minutes she can walk a few more steps. Sometime she just barrels through it -- like she is mad about not being able to go further-- but then she pays for it by gasping and asking me to turn up the liters on the oxygen machine. She also has fluid in her pleural cavity that has to be drained-- thank GOD we can drain that or she would be really miserable all the time.
I hate seeing her like this and I am so nervous about what is happening to her. I talked to the RN about getting my sister here-- is it time? She said she did not think it would be this week. That just scared me because I didn't think it would be this soon. It almost sounds like she is saying it might be next week. I have scoured the boards looking for an experience with Ascites so I know what to expect. The RN just tells me her organs will not be able to withstand the pressure and she may get very blown up with the fluid. She says I should just watch her and if she has difficulty breathing to give her the morphine and try to calm her down. We have had a few episodes of manic behavior when oxygen cannula came out of her nose and she was struggling to breathe. It must be so scary for her. I know she is ready to go and not afraid to die -- I guess its just human nature to hang on.
I am reading Final Gifts and it is helping me a great deal. I suggest anyone dealing with a dying loved one read it. I don't feel so alone.
I hope this is not upsetting anyone -- I do not want people to be afraid of what happens at the end. I will tell you my mother is in NO PAIN. She simply has a difficult time breathing. When she is sitting and doing nothing we are able to talk and laugh. I just dread the times we have to try to make it to the potty or to the shower because of how her body handles it.
I will keep you posted and send a picture of the fabulous bed we can't wait to get!
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My mom died in my home in 2012 of Pulmonary Fibrosis.
Hospice made a painful, difficult situation somewhat more bearable.
I simply would have lost my mind if I didn't have their help.
I wish peace for you and your mom.
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I've had plenty of experience with ascites but not ascites while in hospice care. Of course my reaction would be to have it tapped for comfort but it would have to be done at the hospital and she's so far along I don't know what the ins and outs of that would be with hospice. Wish I could help with that. Hopefully someone else will comment who has dealt with that at the end. So good to hear about the hospital bed. You guys will love it. Makes it so much easier for all. I'm so glad she's not in pain and that you are continuing to have good moments! Thanks for the book advice. Since I'll be having to do this again with my sister( Ovarian Cancer) relatively soon, I'm going to pick it up.
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MyMomsKeeper, I am so happy that you can be there for your Mom, and share the good times. Even though these days may be few and difficult, you still have time to be not only be your Mother's care giver, but you are still her Daughter. I hope you have time to focus on the memories, and that you find peace as your Mother begins her final journey. Time is such a gift, I hope you treasure the days that you have with your dear Mother.
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My beautiful mother passed away on Feb 23, 2015 at 3:58 PM in the afternoon. She was surrounded by her family when she took her last breath and it was beautiful. Jesus was there with us and we will forever be grateful for the opportunity to see her out of this world. I would describe it as Labor in reverse. It was a long weekend knowing it was coming. She told me it was time and to get everyone there. It happened very quickly. One day she was eating and able to ambulate with her walker with me helping her up and the next ( that Friday) she could barely stand because her feet were hurting so bad. She wanted to get back in her hospital bed and she did not want to eat. I knew then that she was done and ready to go. She asked me to get my sister and her brothers there quickly.
The next day (Saturday) our immediate family came in and she was able to see them and talk to them. Sunday morning she slipped into a quiet coma and did not wake up again. Hospice came in on Monday morning first thing ( I had been in touch with them over the weekend and gotten some direction on meds) and helped wash her , change her nightgown, put a catheter and arranged her where she would be more comfortable. The nurse told me when to give her meds and really thought it would be a few days because my mother was fine when she saw her Thursday as far as Oxygen Saturation and eating, etc. At about 3:00 PM she began breathing very sporadically-- taking a breath every 30 seconds or so .. the breaths got further and further apart and we held our own breaths waiting to see if every breath would be her last. Eventually she just raised both shoulders and sighed -- and that was it... she was gone. We cried and rejoiced at the wonder of it. We know she is in a better place and we are not selfish enough to ask her to stay longer with us.
I cannot stress enough how awesome it was to have her with me those last 4 months. It was hard-- probably the hardest thing I have ever had to do. Not physically but emotionally. I'm so thankful she was at peace and there were no complications.
Hospice is a wonderful thing and my idea of death has completely changed. Sometimes living seems harder.
I will continue to pray for you all and if you have any questions please message me and I will answer. I know how scary it can be not knowing what to expect. I hope my posts give you some comfort if you are at the end or you are taking care of a loved one in the last stages of life. I know I was scared and I did not know where to turn for information.
Much love!
Dawn Johnson
Daughter of Jacqueline Ruth Garner
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my condolences to you and your family.
I was with my mom for her last days, in a hospice facility, and I like how you put it, labour in reverse. My mom brought me into the world, it was my pleasure to be holding her hand as she took her last breath....
Peace be with you
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Dawn, thank you so much for writing such a beautiful post. Your Mother was blessed to be surrounded by her family, and her heart full of love as she left our world. I am so glad that even though we never want to lose the ones we love the most, you sound at peace and thankful she had a graceful passing.
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Dawn, your post has brought tears to my eyes, not just for the loss of your mom, Jacqueline, but for the loving way you were able to be there for her these past four months. Truly, she was blessed to have you in her life. Please accept my deepest sympathy for your loss. I am appreciative of your posts on this matter; they have provided some insight. God bless; hugs and prayers for you
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Dawn, thank you for this thread and all the great information. My sympathies about your mother, but I am so glad you were able to be there for her and I am sure it was a blessing to have you care for her.
My mother has stage IV uterine/ovarian cancer and also BC. She did chemo and surgery last year, but her CA125 is rising rapidly. She still feels fairly well other than having difficulty breathing. At our urging, she has met with hospice, so they can get to know her and what her wishes are for the end. I am so glad that she has been able to do that and feels very comfortable with the care giver that she met with.
Thank you for the insights and honesty about your experiences at the end. Hopefully it will be a help to others.
Blessings to you,
Bren
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Dawn, I am so happy that you had those four months with her the way I did with my mom, caring for her. As we talked about before, now that it is over you will always be able to treasure even this memory as I do, though as you said, it is the hardest thing we will ever do. It is amazing how peaceful it can be at the end when everybody is on he same page and we do what's best for them and not what's best for us. I'm so proud of you and so glad your mom had such an amazing daughter and family. Now you can rest.
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You ladies are the bravest women in the world. Fighting and clawing for each day with your family. Keeping your chin up when you probably feel like giving in. I wish I could hug each one of you. I am changed forever because of this experience. I am amazed by your posts that encouraged me -- when you have your own battles every day. Such selflessness is rare and is a testament to your courage and love for people. Love and Hugs to each of you.
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MyMomsKeeper, Thank You, you inspire me and encourage all of us. As you know, we never walk alone here, and we will all be together forever because BC has changed all of our lives. You have shown me that love has no end, and this journey can be peaceful, and graceful. It lifts my heart to know that you have such kind words for the others in your Mom's world.
I hope that you have found peace, and that you are doing well. Take Care.
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thanks for this post. My mum is where yours was. Hospice have become involved recently. My parents house is full of exurb machines, commodes, wheelchairs and all sorts of equipment.
And my heart is full of fear and sadness. Your post helped me feel less alone
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Papillon1 .........I came back here today because I woke up and started thinking this was the day one year ago that my mom started to decline rapidly.... and I couldn't remember anything about it. I mean... of course I could remember some details... but not specifics like the day of the week she passed away. I was almost in a panic and then remembered I had been on this board and talked about much of what was happening.
So here I am -- again -- almost one year later. And once again I am thankful for this board and it's precious members.
Seeing your post-- my heart goes out to you-- it is such a hard thing to watch a loved one leave you so slowly. But I promise you -- it is also an amazing blessing. You have this time to spend with your mother. If there was one thing I would do over it would be to just stop working the last 2 months and spend every waking moment with my mom. Although I had my mom at my house the last months I continued to work until about 2 weeks before she passed away. Even then I worked from home as much as I could. My husband was working from home at the time, so he was with her to get her what she needed and I felt justified. I should have been in that room with her every minute instead of worrying about falling behind at work. The other thing I would have done is record conversations with her ... while she was still talking and laughing. It sounds crazy but I used to call my mom's cell phone after she died just to hear her voice. Then one day -- about 4 months after she passed away.. I called and a guy with a Spanish accent answered the phone. I cried -- then I laughed -- then I cried. I have a few very short recordings I did on my Iphone-- before she got really sick-- and they are fun to listen to. I wish I had more.
You will miss her everyday. You will wish you had a minute with her again and could hear her voice or her hand in yours. So take this time and spend every minute you can -- no matter how much it disrupts your life...no matter how much work you feel you have to get done ... because it will still be there when she is gone ... but she won't.
I am praying for you and your family. There is not a day that goes by that I do not think of these brave ladies battling this disease. They are my the true definition of courage and heroism.
Dawn
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