I contacted Hospice today for information. I appreciate Denise’s advice to inquire about an evaluation. I had a very uneasy feeling dialing the phone.
The woman who answered was very kind. The lady in charge of the evaluations will call me tomorrow. I will post an update.
My mother struggles so much with her walking; sitting up from a laying position; standing from a sitting position. She’s in a lot of pain. She’s so confused. Swallowing is very difficult, both with pills and certain foods.
I know the decision to call was a very good one. I want her to have what she needs, just as soon as she needs it.
Somehow, I felt like this call was going behind her back…although I know to assure her good care, the more educated I am about her needs, the better.
It helps to put this into a blog. The shakiness eases a bit—thank you.
She may not need hospice for a bit, but a calm and planned conversation always helps keep clarity.
You are a disruptor. The delivery of health care starts with you, continues because of you, and ends with you. Let's disrupt together to make the world better for family caregivers. 
Denise
Hi Bette–First, I am so proud of you! That’s such a tough call to make! Even though it’s nerve-wracking and unsettling, you do it. Good for you!
I can understand that it feels as if you are doing something which affects your mom without actually consulting your mom. It’s okay. You’re gathering information, making a connection which will help both of you. When you make a phone call like you did today, you’re acting as your mom’s advocate.
I’m hoping that the nurse who evaluates will offer suggestions on how to manage your mom’s pain as well as options with swallowing.
I know this feels like such an awful step, but it’s a good one. You’ll both benefit from the information and planning.
Let us know what happens tomorrow…
Denise
Hi–Just one other thought: I hear on a regular basis this regret from family caregivers: I waited too long to call Hospice.
When you call too early, you never call too late.
Jane
Hi Bette:
I can’t imagine what a difficult decision this must be for you. I know you made the right decision.
My thoughts and prayers are always with you.
Hugs:o)
Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
G-J
Bette, I have been in your shoes and know the feeling that you are going behind your parent’s back. My Dad went on hospice. The doctor presented it to him with on question, “Do you want to die at home or in the hospital?” Having watched my Mom die in the hospital after spending 11 days with everything conceivable poked into her, there was no way he wanted that. Even with that, it was uncomfortable to make the call. However, it was definitely the best decision I made regarding his care.
Hospice provides support and supplies. Once my Dad was on hospice, I no longer purchased incontinence supplies, for example. When a hospice worker came, they brought them. Hospice meant support for my Dad in the way of nurses, volunteers, a pastor, and a social worker visiting him. It also meant when he didn’t like the pastor, we could request they no longer visit. Hospice also meant support for me, a novel experience! The social worker would call just to ask how I was doing. Whoa!
Supplies were offered all the time. Did we need a hospital bed, wheelchair, oxygen (yes, that was needed). All these things were delivered, and later taken away so I never had to worry about them. Oh, they even sent someone out to shave him and help him with grooming!!
Hospice was a place to call 24/7 – literally. People answered, people came, people helped. It was truly an amazing experience. It really does bring a “team” into your parent’s life. Support was also available for Steve and our son if they wanted to talk to anyone. And the support was available for a year after my Dad passed away.
I think one of the hardest things about hospice was thinking that my Dad might have only six months. After all, isn’t that what we’ve all heard as the definition? Well, remember that no one knows what’s going to happen except God, and he doesn’t let us know in advance.
My Dad was on hospice for two six month periods, totaling a year. Then he was off, declined dramatically, went back on, and passed away during that six month period.
Bette, you’ve done the hard part in making the first call. They will let you know which way you go from here. If your Mom does go on hospice, find out what they offer and use everything your Mom needs. Let someone else help you right now.
We’re here for you, Bette. Remember to let us help you, too.
Trish
Bette, What a tough call to make but you were so strong in making it. Hospice helped us when my mom was diagnosed but it was a whirlwind experience (mom died 2 months after her cancer diagnosis). I absolutely loved the hospice workers. It was a flurry of activity at first when they brought in the hospital bed, the wheelchair, etc. G-J is right — they are available 24/7 and we had to put that to the test. They really were awesome. I hope you have a similar experience with them when they are needed. Right now, you’re gathering information which will only help you down the road. You are so thoughtful and careful about all of your decisions. You can be assured you did the right thing. Take care.
Sharon
Bette, I agree with the rest. You made a wise decision, as difficult as it must have been to make that decision. My husband, Wayne, was never on Hospisce, but my mother-in-law was on it. It was a blessing.
Bette
I’m grateful for the conversation I had today with Hospice. The lady I spoke with was very kind. She said a few things that I wanted to share: “When you call hospice you make it real, it doesn’t change what is happening”…”this gives us a time to be more intentional vs. limited”…”we will give you as little or as much as you need”…”the support will come to you”…she also talked about wanting to help us orchestrate my mother’s care and help us create good moments and comfort.
She talked a bit about Medicare guidelines. After talking to her about my mother’s daily needs, she said she is either ready for Hospice or very close to ready. Her main concern is in regards to my mother’s swallowing challenges. This, she said, happens during the end stage of dementia – although noone knows how long it will remain as is.
Toward the end of our call, she said she’d like me to process all that we had talked about; I will talk with her again next week. She would like to do an in-home evaluation, but leaves that decision with me. I told her about my support group here, and she said before next week, to talk with each of you about it too. I’m so grateful for the wisdom and sharing here.
Although the evaluation will be difficult to order and participate in…I know it is the right step to take.
I feel better this afternoon, and actually breathing a bit easier now that the initial contact, and conversation, has been made. My mother will have the appropriate medical care and attention that she needs when she needs it.
Denise
Hi Bette–I’m so glad you’re keeping us posted. It sounds like you had a good conversation and the the words you heard were the right ones to hear.
I think you are taking the right step, too. This kind of step, which seems like it will take your breath away, really gives you the time you need to breathe.
Bette
I was able to talk, in person, for a bit with my mother’s doctor this morning. She asked if I understood what was happening; if I understood that she “couldn’t fix anything anymore”. She was very compassionate and offered to help in any way she can.
I asked Stephanie, our Thursday a.m. aide, to take my mother to get her hair done this morning.
As the woman from Hospice indicated yesterday – this was probably more for me than for my mother (she always loved getting out). It took Stephanie and I, to get her back into the house. She’s sleeping now – and probably will be for a while.
G-J mentioned last week about having someone come to the house to wash and set my mother’s hair. I just spoke with my mother’s hairdresser. Beginning next week, she’ll come here. Another call I thought would come later.
I’m trying to keep in mind that these changes are all for my mother -for what she needs.
Denise
Hi Bette–I’m so glad you called the doctor and spoke with her. I also think your decision to have your mom’s hair done at home is such a good one. It’s really about making life (and having a good ‘do is a good part of life) as easy as possible for your mom.
One suggestion: If you can, let go of judgments about the timing of changes and decisions. In many ways, we aren’t in charge of our life’s timing. Life often happens (spouse, children, jobs, opportunities) when we let go of believing we know the right time.
We also can’t time a disease process. We also can’t time a death. When we have judgments about the arrival of a decline or an end of life, we lose out on the time we have. Truly, this time of life, when we’re with loved ones at the end, is so much about letting go so we can let in.
Thanks so much for keeping us posted.
Bette
Thank you Denise. All of these changes somehow seem like they are not real. I feel as though tomorrow: she’ll walk better, be able to get out of her chair, feel better – and then we can change things back.
Always before, I’ve been able to search and resolve. The resolving now seems like I have to stop searching and give up. I really felt after talking with the doctor – that we were.
Maybe the resolving is in searching and providing the best care and decisions to make the best days. I have a hard time shaking this feeling that I can’t let the disease win.
Thank you for your comment about judging. I will work towards the letting go, so that we can just appreciate.
Denise
Hi–I think I hear that you felt like you were giving up after talking with the doctor. I’m going to base the rest of my comment on this assumption. If I’ve made an incorrect assumption, let me know!!
Here goes:
When I first read the doctor’s comment (“I can’t fix anything anymore”), I grumpled quite a bit. First of all, this isn’t about her (at all).
Second, I don’t like the idea that a situation or a person needs fixing. And, certainly, in a situation where you are caring for a family member, I don’t believe there’s a place for fixing. Solutions and support, yes. Fixing, no.
Since you’ve talked with Hospice, I have been thinking this thought: Bette won! She made it with her mom at home. Isn’t it wonderful that she’s won!!
I don’t believe there’s ever any battle between ourselves and a disease. The battle takes place within ourselves over how a disease impacts us. We give in, we give up. Or, we keep living as well as we can for as long as we can. (Remember Nelson, Judith’s husband?)
The disease isn’t winning. You and your mom are both winning.
We don’t live forever. The battle to win forever is a futile one. It’s useless. It’s actually not a battle we were made to fight. We’re not here to live forever. We’re here to live as well as we can for as long as we can. That’s the win.
And, you’re both winning because you’re both right where you want to be. Why does that need to be fixed? You’re exactly in the right place, receiving the right support. Why is that giving up? Why is giving your mom an ending that you both wanted a giving up?
Your true search in caring for your mom is only beginning. Don’t give up before the real reason you are together really begins. Now more than ever, your resolve will come in handy.
Bette
Thank you Denise. Your reply was emotional yet strong…and so needed. It is to be printed and put into my journal – thank you.
I think it’s interesting how different words (important words) can mean different things at different times – and if the same meanings are always applied, what a difficult position we can put ourselves in.
I’m so anxious for the Journaling Class to begin: Resolve, Win, Together, Battle, Search and Find – they all can take on meanings that are stronger for us – at various stages in caregiving. I’m so looking forward to the show on Regret tomorrow.
I know what you are saying is so true. My thoughts will catch up with all the emotions that are thrown in right now. It will feel better when the thoughts and emotions are walking together. (:
Trish
Denise, Wow. You are so full of wisdom and support and love. This reply wasn’t even for me yet here I sit with tears in my eyes. Your support here is unconditional and what you are doing for us goes beyond what any one of us could expect. You are really, really wonderful. Thank you.
Trish
Bette, I’m so sorry for all of these changes but so admire the way you are handling them. I love what Denise says about letting go of judgments about the timing of changes. So often we get caught up in the “shoulds” of when something is supposed to happen and it can cause all kinds of angst when things don’t go as planned. (Not that I know anything about this or do this myself!).
My heart is with you, Bette. Take care.
Bette
Thank you Trish. I so appreciate the reminders of what is important to hang on to.
G-J
Bette, These transitions are so difficult, as in transitioning your mother into hospice. Wasn’t transitioning your children into public school just a few weeks ago challenging? Bette, I will tell you quite frankly that I never once regretted putting my Dad on hospice. It made his life so much easier. No more having to drag him to the doctor for a check up, for example. And it took until a few months before he died to realize there was a hair salon right where he lived and they could also cut a man’s hair!
Oh, I’m so glad someone will come to the house to do your mother’s hair! My friend started this in January when her Mom was very ill and they didn’t know how much longer she’d be around. Well, it’s October, and although her Mom’s health has improved (she wasn’t on hospice) they still like the arrangement of someone coming to the house to take care of her hair styling.
Bette, it’s okay, you’re doing everything right. It will get easier once everything is in place. Hard to believe, but you may actually be able to relax a little!
Jane
When I was reading Denise’s last reply to you Bette I was thinking that at some point I will be in your same situation. Of course, I don’t think about this but I know I will be.
I thought the other day as I was walking to the mailbox about the term “terminally ill” and realized that technically we are all terminally ill as we will die of something that can’t be cured or “fixed” (which like Denise I don’t like the word).
Hugs:o)
Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
Kathy
Bette,
I am so happy you made the call to Hospice.
I remember when we called Hospice for my Grandmother-(mother). She was very upset because she had a pre conceived idea about what they did. It was after we informed her that they (Hospice) would not be taking over her life, just helping her live it to the best of her ability. She could still do the things she wanted like going to the quilt club she was a member of and watching the square dancing she was involved in.
Hospice would not interrupt her life, just help us all enjoy it more
She agreed to have them and they were FABULOUS!!
And true to my word, we did the things that my Ma wanted to do right up until she didn’t want to do them any longer.
She picked and chose what she wanted them to do and they respected that. They were like the friends that actually do something. They come prepared with equipment and support. They stand at the guard waiting to step in wherever and whenever needed. I think as caregivers, we aren’t used to having that and it feels awkward.
I love that you found someone to come to your house to care for your mothers hair. YAY!!!
And Denise’s response was so heart touching and powerful. There is nothing I could add to what she said. I agree with her wholeheartedly and Trish’s reply to her!
Bette, we love you and want you to know you are doing a wonderful job in caring for your mom. You have done everything to give your mother, your family and you the best quality of life anyone can have. You continue to do that daily. What a blessing you are to me as I have the honor to know you and learn from you.
You are in my prayers.
Unit Known as Shandi
I checked in on caregiving.com today specifically to see how you and your Mom are doing. Your posts seem to echo my experiences with my mom so closely. I know how you feel right now! Hospice will be a big help to you, and to your Mom. I honestly don’t know how we would have handled the last month of Mom’s life without their constant wisdom and availability. They were truly amazing. I guess the one thing I would tell you is that you have the right to request a new person if any one Hospice employee doesn’t “click” with you or your mom, or doesn’t have the same goals as the rest of the team. I didn’t realize that in the beginning. I’m glad you are storing up all of your Mom’s “I love yous”, and that she is expressing that to you. I allowed myself to peruse the avenue of “what ifs” yesterday, for a brief time (I really try not to do that). I found myself wondering if Mom felt cared for, if she knew how much I loved her. She showed so much love to me, right up to the very end. I know that she knew how I felt about her, and that she was right where she wanted to be. One regret I had was not allowing Mom to talk to me about her final wishes. I was so focused on keeping her going, finding answers, and the day-to-day responsibilities of caregiving that I didn’t have those conversations with her when she was able to respond. I don’t know if your mom can have those now or not, but if she can, I’d encourage you to let her talk and to reassure her. Mom knew her time was short, even when I didn’t feel like there was a medical basis for that (this started in January of this year). I’m praying for both of you, as well as your whole family. God is in control. You are an amazing daughter, caregiving, and advocate to your mom and I appreciate all the wisdom you have shared with us!
Bette
We had the Hospice Evaluation this morning. The nurse was pleasant, but a substitute – so I’m sure we will meet another soon.
My mother will be admitted to the Hospice Program Wednesday morning. The nurse explained that we will be eligible for aides up to 3x a week and volunteers as well. She went on to explain that if we see a plateau, she will be discharged from Hospice and that we may contact them at a later time.
I don’t think my mother understood all that the nurse eluded to – which I’m grateful. I’ve explained to her (two or three times since the visit) that we are so lucky that the nurses will come to us – that they can watch and be sure she always has what she needs.
My mother will also have a speech evaluation to help us understand the swallowing challenges.
Thank you so much for all the kind words. Thank you Denise for your suggestion to contact Hospice.
Trish
Bette, How are you doing after the evaluation this morning? It sounds like you were pleased with them and the help they will bring. You did a great job making your mom feel comfortable by explaining to her what you could. This process may bring up new (or old) feelings for you so please let us know how you’re doing with all of these changes. You’re so strong and such a loving daughter. I hope your shoulders feel a bit lighter today. Sending hugs & love.
Bette
Hi Trish,
This is the only time I can think of that there’s been a significant change in caregiving for me and I’m not sure what feeling it brings with it…
I know we are not in any immediate danger, the decline however, has been significant and continues to be so evident.
I am very grateful for the medical team that will now be involved in my mother’s care.
Thank you for your hugs and warm thoughts (:
Denise
Hi Bette–This is a tough one, isn’t it? It’s good to know you and your mom (and Greg and the kids) will have the help and support you need. But, it’s just a tough pill to swallow. (It’s the only term I can think of right now…) It’s good and it’s bad at the same time. It’s sad and, yet, I hope it also feels hopeful to you. You have hope now that you can continue to be with your mom when she absolutely needs it the most.
Will you let us know how you’re feeling tomorrow?
Bette
We had our first official visit from Hospice this afternoon. I had contacted Hospice last week regarding some reservations I had about the person who had initially come to the house. In all that I’ve learned here on the site – I knew it wasn’t just important to voice concerns, but necessary to voice the concerns. I’m so glad I did.
The concerns were greeted with open (and welcome) arms – and attended to quickly and easily.
My mother has been assigned an RN. She is wonderful. We visited for a bit and then went in to talk with my mother. She will come weekly.
My mother has been struggling a bit with some agitation. I have a phone appt. with her geriatric psychiatrist, who is in RI, tomorrow -in hopes she can give a suggestion for agitation that would work best for my mother – the hope is that there is an alternative to ativan – my mother has not done well with ativan in the past.
Hospice was more than willing to listen to my concerns and fears regarding my mother’s medications. They will include our doctor here, in talking about my mother’s needs, and were not at all opposed to including (and talking with) the doctor in RI. I feel relieved this afternoon.