Subject: My mom update
I arrived at my mom’s yesterday afternoon. I saw her last month but it is quite evident to me how much weaker she seems and how much harder it is for her to get around. I am definitely more nervous about the fact that she showers without someone in the house each day. She could very easily fall and she realizes that. But, that said, I know we won’t be convincing her to have nurses care yet.
She is very weary of everything at this point, most notably the search for answers. She has tried so many treatments, drugs, seen so many doctors, filled out so many forms over the last two years only to watch things get worse. And while I know you all love her so very much, there is one thing that needs to stop…and I say this because I love my mom and I know this makes it so difficult. Please, we all need to stop suggesting, stop asking if the doctors are doing this or that, not push too hard on if she is eating or drinking. I think it seems like every phone call or visit she gets has another person trying to play doctor – and again, I know it is because we all care, but she is just as drained mentally as she is physically. She is doing the very best that she can…each and every day. And I know she values the support, but she also has a strong desire to please and make people happy so she is always more concerned about others than herself. So when a suggestion comes, she doesn’t want to disappoint or give anyone the impression that she isn’t fighting anymore. Keep loving her, keep calling and visiting. But understand her limits. If she says she really can’t do a visit, don’t be offended. It takes a lot for her to say that, but it also means she really can’t do it.
It is really hard for all of us to watch her go through this. But it is 1000 times harder for her to be living it. We can’t possibly know the pain she deals with every single day. And we all know that mom is not a complainer – so when she complains of pain/suffering, that means it is bad. Sometimes I have no idea how to be supportive. Sometimes she lets her guard down with me and shows her emotion. That is how I know all of the above to be true. I try to let her be real, to tell her it is ok to be sad and confused and frustrated. But trying to understand why this is happening to her – I hope and pray that she will stop doing that. There won’t ever be an answer to that and my prayers are that she will stop thinking she did something to deserve this.
I don’t know how to thank all of you enough for helping her through this. I try to be thankful that she still has her mind despite all the physical ailments. I don’t know if chemo is inevitable because of the return of her pain. I really hope not because I honestly don’t know if she can take it. She doesn’t see Dr. Gordon for a couple weeks because he is gone. She did speak with him by phone last night and his staff knows how to get him if mom needs him. I am going to pick up a prescription for something that might help the swelling in her feet. It has gotten bad and it doesn’t seem to subside even at night.
I will keep giving updates as I can. Ask me questions as you need to – rather me, than her! Love to you all. Hope to see a few of you during my visit.
Subject: Re: Donna’s 60th Birthday July 19
Hope this note finds you doing well. I’m not sure where things are in the birthday planning for my mom as I haven’t gotten too many more emails, but I wanted to offer some thoughts. As much as we all hoped a surprise party would be the way to go, I’m not sure that is the right idea anymore. The amount of bad days my mom has now vastly outnumber the good days. And even the good days might mean that she can only be “active” with people for a couple hours. A party would be overwhelming since she can’t eat and struggles to visit for long periods of time. I don’t want her to feel bad if she gets sick or needs to rest…then for days later she is so worn down.
All that to say, I really do want to make her 60th birthday very special so we might need to brainstorm some ideas. I feel like maybe we could celebrate her for an entire week with people visiting daily, possibly bringing different things that remind you of Mom. Maybe her favorite flower, a framed photo that you love (could be from her childhood, high school, later in life! Whatever!), gift certificates for pedicure/manicure (she still really enjoys that), etc. I’m sure you all can help me think of things! Maybe we can make a large photo album of tons of photos we all have of our family over the years. That would give her something to look at all the time. I think we could have the mail flooded with cards from everyone she knows…we can all work to reach out to people that would want to send them. I would hope my brothers and I can be there on her birthday or at least that weekend right after. I’d love some feedback…I just wanted to restart the conversation based on how she is at this point.
Thanks for everything you all do. Much love.
Subject: An Update
I hope you are doing well. I am traveling back from Chicago where I ran in a team relay event from Madison to Chicago. A lot of fun and our team ended up finishing in 4th place out of 200 teams in our division. Not too shabby. Legs are a bit sore after running just over 25 total miles and not sleeping for many, many hours!
I’m not sure if you all have spoken with my mom recently but these past five days or so have been pretty bad. She is unable to eat and is getting sick much more regularly. I haven’t even been able to talk to her because she is too tired but Jack has kept me informed. Her appointment with Dr. Gordon got moved up to this morning so Jack took her there. She is so weak. She wasn’t even able to use the walker to go from the house to the car. Her blood pressure was 70/40. She got fluid and Dr. Gordon said there was no way she could do chemo. He scheduled her for an endoscopy to try and see what is happening in the stomach – see if there is any type of blockage. That appointment is on Friday so we’ll see how that goes. She will go back to Dr. Gordon next week.
I’d imagine I’ll be returning home again very soon and my brothers and I hope to all spend some time with her all together. I am going to look into some family medical leave at work so I could have more flexibility and I can still work primarily from home I think. I’ll keep you posted on what I am able to do.
Not sure what we can do other than keep praying. I know that anytime I feel like something is difficult or painful I think of her and what she goes through every day and I try to plug on through. Not sure how she is continuing to fight at all – amazing.
Love to all,
Subject: An update on Donna
I am sending this email to give you an update on my mother since she hasn’t been able to reach out to all of you recently. Last week was a week of rapid decline for mom, and on Saturday, Jack and Brian brought her to Holy Spirit hospital in Camp Hill. She hasn’t kept food/fluid down for quite some time so she has been on an IV since arriving at the hospital. Her breathing is getting more and more labored by the day and any exertion is causing her to struggle. She has been on oxygen for most of the last 24 hours. Sleeping is a struggle because she is very uncomfortable and when she reclines at all, she can’t breathe.
I met with the on-call doctor – who works closely with Dr. Gordon – this morning, and she was honest about what is happening. There is nothing more they can do for mom so the goal is to make her as comfortable as possible. I met with hospice this afternoon and we are in the process of getting that set up at home. We will get her a hospital bed and make her room as functional as we can. She is no longer able to move from the bed to the bathroom or anything like that. Seeing her now, it is amazing she was still showering by herself last week. That is how quickly things are changing right now. Dr. Gordon and I are playing some phone tag, but I will talk to him in the morning if not before. Hospice is his recommendation. She is too weak for any additional testing and that would just take an unnecessary toll on her body if she could withstand it.
We are researching the possibilities of more at-home care since hospice is not a 24-care service. Hospice will come in and help with personal care and some other things, but it likely won’t even be an every day occurrence. I have reached out to some of Mom’s friends in the medical profession and we’ll go from there. Time will tell what we need.
I have no plans to return to NC right now and will work from home with mom. I will do my best to keep you all updated and please let me know if you have any questions. Thank you all for your many prayers and all the love you give her. I know how loved she is based on all the people who are asking about her on a regular basis. She talked today about how lucky she has been in her life as far as her friendships go. She values you all so much. Please continue to pray that her suffering will lessen and she can be peaceful.
Subject: Family Update on Mom
Thank you all so much for your thoughts, prayers and love. Mom wishes she could talk to everyone herself. As you read in the email I sent to her prayer chain, she is struggling all day. She looks worse today than she did yesterday. I hate that I have to pass on these facts by email, but we don’t have the luxury of all being in the same room together and I want to make sure you all are informed.
Jack and I asked the doctor for some perspective on the time mom has left with us and she was honest in that she believes we are talking weeks, not months. Mom’s health is so very poor and she is so uncomfortable. We are doing all we can, but her state doesn’t allow for a lot of comfort. As you read, I’m researching additional care options at home, but I do want to gather some information from you all about how comfortable you are being around to help her at the house. I understand that what you say now might change as you see her condition and that is ok. More than anything I want to keep mom at home as that is her wish. And I don’t want anyone to feel uncomfortable or unequipped to help her, so if that means we find nurses to be around in shifts or even 24 hours a day, that is what we will do. I just would appreciate your feedback.
Besides helping her, I know you all are anxious to see her and visit. I think the best thing to do is try to work out some kind of schedule because mom is very limited in the kind of visiting she can do. I don’t think any more than one visitor on a given day is feasible and mom doesn’t have the energy or lung capacity to talk for very long. That said, if you want to be at the house, just to be around, that is understandable. We just have to plan some things out so we don’t disrupt her comfort.
We hope to move her home as early as tomorrow and I will of course do my best to keep you informed. I’m sorry if I am out of touch at certain times – just trying to get things in order. Please let me know what questions you have.
Shawn just got to the hospital and he will be here at least tomorrow and we’ll go from there. Brian is going day-to-day at work right now. Jack is well…amazing as always but he needs your prayers, too. He realizes what we all do and that is so very hard. I hope he knows how much mom loves him – she keeps saying how sorry she is that they won’t get to do all the things they’d planned to do.
Let me know thoughts that you have. Thanks and I wish I could see you all. Please forward this to family that aren’t on this email.
Subject: Tuesday updates on Donna
Thank you so very much for the many kind words, emails and phone calls. My mom is such a loved woman and so lucky to have all of you in her life.
Today was a very long day for everyone. Hospice brought various equipment to the house so we could get her room set up and make her as comfortable as possible when she arrived. My mom’s biggest wish was to be at home so that was our main concern. After getting everything ready, Jack, Shawn and I went to the hospital and worked to get in touch with Dr. Gordon and go about figuring out her discharge. While discharge was originally set at 1:00, it was around 3:30 until the transport took mom. We are keeping her on liquid morphine quite a bit right now because of all of her breathing difficulties. The morphine works to take away the feeling of breathlessness and suffocation. It also relieves some of the anxiety, which can contribute to her poor breathing. We got here around 5:00 and a hospice nurse met us to help make mom comfortable. Mom is on oxygen and will continue to be that way. She has been sleeping soundly now for quite a few hours which is a nice change. She hasn’t been sleeping well at all at the hospital, often spending hours upon hours in a chair because being in bed made her breathing so poor. She is very sore because of this and that will continue as she is bed-bound.
I finally was able to have a conversation with Dr. Gordon and expressed my concerns about whether we need more care than hospice. He was definitely in favor of that, especially to lessen the physical care giving from her immediate family and friends. She is so uncomfortable and so having inexperienced people offer care scares me. We just want to make her as peaceful as possible. I am in the process of figuring out additional care, but hospice is helpful so far. We are hour-to-hour at the moment.
I did ask my mom about visitors earlier today because I know everyone is anxious to know if they can see her and how they can help. At this point, she said she can’t have visitors. She is very, very sick. As we can attest and the nurses have also said, it is so hard on a patient in her condition to even hear conversation. It wears them out. I know some of you saw mom as little as a few days ago, but she is declining very quickly right now. She falls asleep even as the nurses try to help her.
I am sorry and sad to report such bad news, especially by email but I don’t know another way to communicate with so many people. I wish I could tell you all to come visit but this needs to be about making her as comfortable as we possibly can right now. I will do my best to continue with the updates and let you know how her days go. Tomorrow will still be time getting her settled in different ways since we are at home. My brothers, Jack and I love you all and couldn’t do any of this without your support. Please keep praying for her.
Subject: Wednesday notes
Sorry for my late email. I haven’t had a chance to sit and write until now. Today was filled with various nurses and aides and us trying to figure out all the ways that we can make Mom comfortable. While I don’t want to bore you with details, maybe the “best” part of the day was when two of my mom’s friends (who are nurses) came to take care of her this evening. You could see the love in every touch and I know that all of you would be the same way if you could be with her. I couldn’t appreciate them more for helping us ready Mom for the night. They are already set to come back tomorrow evening.
Two of Mom’s sisters and one of my cousins also came for a brief visit, which was very nice. It was good to have some family around and they were able to be there when the priest came by. All of us were able to take part in prayer and anointing with Mom…and when the priest jokingly told Mom that he called her yesterday and she didn’t get back to him, she replied…”I was busy.” 🙂
I only wish there was more I could do to keep Mom from being in pain. I did put a call into hospice about a different type of mattress and we are also hiring some other professional part-time help that hopefully will offer many, many more skills than I can.
The prayers, calls and emails that continue to come in are a testament to my Mom. She loves you all so much and I tell her you all are asking about her. Keep praying that her suffering will be less.
Erica (and Shawn, Brian & Jack)
Subject: Prayer for today
Thought you all might have a moment to pray Peggy’s prayer for today. Sorry I have not been able to forward them all. Thank you for your continued support.
Prayer for Thursday: Gracious God, We thank you that Donna is at home as she wishes. We ask that medicine be found that will ease her pain and make her comfortable, that help be available who understand how precious she is and take loving care of her, that you be with her and her family to heal and to bless, that she experience your closeness, comfort, and peace. Give us courage for the facing of these days. Give us peace that we may find our way through this maze. Give us hope and love and kindness and humor that we may experience you in new ways each day. We are not able to do this on our own. We need your help. Bless Donna and those she loves with your grace, which is sufficient for all our needs, we ask in Jesus’ name. Amen
Psalm 13:5-6 I trusted in your steadfast love; my heart shall rejoice in your salvation.
I will sing to the Lord, because he has dealt bountifully with me.
Psalm 23:4 Even though I walk through the darkest valley, I fear no evil;
for you are with me; your rod and your staff–they comfort me.
Psalm 27:14 Wait for the Lord;
be strong, and let your heart take courage;
wait for the Lord!
Psalm 62:8 Trust in God at all times, O people.
pour out your heart before him;
God is a refuge for us.
Subject: A Prayer for Mom
enable me to place my trust in you,
and so to live in the present moment.
So often I forget
that you long for peace
and healing in my mind
Your song pierces
even my darkest days,
and your hands
the source of
and that inner springtime
which is your gift alone,
Jesus, the Risen One.
The above prayer was passed along to me this morning from Peggy, along with several others to calm our hearts. I am struggling to write this evening and feel that a prayer might be a better use of words. Mom has continued to weaken and has lost the ability to communicate with us. We continue to do our best to comfort her and tell her that it is ok to be at peace. Each of her six brothers and sisters have now been able to see her and I believe she was aware of who they were at the time of their visits. Each of the hospice caretakers have been kind and treat her as a member of their own families…but again, the true blessing is watching her nurse friends tend to her. While she wasn’t able to acknowledge them tonight, they loved her and cleaned her and did so with the gentlest of touch. Her breathing is quite labored and I just pray that there isn’t much pain associated with her current state.
Thank you for the notes and prayers, the stories you share of my mother. I am convinced she was everyone’s big sister or second mother. I know without a doubt she loves you all…and she knows you love her.
Much love from all of us.
Subject: Written with Love
At this time, I’m sure you are all aware that my mother has gone to be with the Lord. She finally gave in to her long fight with cancer, a disease that seems to have haunted her life. But, we can all attest, she absolutely never, ever wanted to stop fighting. It amazes me that with all of her physical limitations, my mom still lived alone, showered on her own, visited with friends up until a week before her death. She fought to do whatever she possibly could until she absolutely couldn’t. She apologized to the nurses in the hospital this week when they had to help her with things. She offered the nurses that came to the house to take care of her a drink. That was my mom. Always trying to make sure others were taken care of. And my joy at this time comes from knowing that by being in heaven, she can now take care of the world.
You have all been blessings in my mom’s life – I do hope you know that. She would want me to tell you that. You are blessings to me, my brothers and Jack, because without you all, the fight would have been that much harder. Thank you, thank you, thank you. Now you can pray to her, instead of for her.
My mom’s memorial service will be on Tuesday, June 26 at 10 am at St. Paul the Apostle Church in Annville. We will have a luncheon following the service at What If restaurant (One of my mom’s favorite places) where she has insisted we celebrate her life. I hope with my whole heart that you all can attend. Mom will be buried with her parents in Altoona — that ceremony will be set at a later date.
Below is a final hymn from Peggy today who has faithfully sent daily prayers for my mother – she did it no matter where she was. Absolutely amazing and my family comments on her words regularly. Bless you all.
Erica, Shawn, Brian and Jack
The Last Journey
From the falter of breath, through the silence of death, to the wonder that’s breaking beyond;
God has woven a way unapparent by day, for all those of whom heaven is fond.
From frustration and pain, through hope hard to sustain, to the wholeness here promised there known;
Christ has gone where we fear and has vowed to be near on the journey we make on our own.
From the dimming of light, through the darkness of night, to the glory of goodness above;
God the Spirit is sent to ensure heaven’s intent is embraced and completed in love.
From today till we die, through all questioning why, to the place from which time and tide flow;
angels tread on our dreams, and magnificent themes of heaven’s promise are echoed below.
My mom, Donna Madden, left this earth 5 years ago today. Sometimes it seems like yesterday. Other days it feels like years and years and years have passed since our last conversation. I remain grateful for the support of so many during her journey of life. These emails are a collection of thoughts, experiences, and emotions over the final month of Mom’s life. Good times, bad times, and through all of our imperfect human love … we miss you Mom … today and always.