thyme4change
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Post by thyme4change on Sept 18, 2014 8:27:18 GMT -5
A friend of mine who lives in another state has gone into home hospice care after being treated for cancer for a while. I am going to visit her, and I'm not good at any of this type of stuff. I have been trying to get her husband to give me a hint, but he clearly doesn't want to discuss this with me. I've only seen one other person in hospice, and it was my FIL, when he was 84, after being in and out of the hospital for months. It was what I thought it was going to be - a hospital-type room, with him in a hospital gown some days, and sweat pants other days, and he was in a hospital bed.
With home hospice, what might I be walking into? Will she be laying on the couch? Will she up upstairs in her own bed? (I don't think she is able to climb the stairs, so if she is up there, she will stay up there.) Do they bring in a hospital bed for her? My FIL would occasionally (at the beginning) get up and walk around. Is that unusual?
I did see her about 6 weeks ago, and I know there has been decline since then, so I at least have some framework, but I want to get my head into the right space, so I won't my emotional crap surrounding illness and death onto her. That probably isn't what she needs right now.
Also, I was thinking I would bring pictures from a couple of the trips we took together. To give us something to do and talk about - good idea? bad idea?
Any other suggestions on how to handle this like a good friend instead of a terrified, tacky idiot?
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Deleted
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Post by Deleted on Sept 18, 2014 8:39:01 GMT -5
A lot can happen in 6 weeks. Be prepared. I'd call first to make sure she is aware and your visiting will make a difference to HER.
By the time my uncle and grandfather had hospice, they had hospital beds brought in, and neither were recognizable. It was very difficult. It is a good place if you need to grieve publicly, I mean if you benefit from others holding hands, hugging, crying. I'm not that kind of person, I find it extremely difficult. I wouldn't let the kids go even at 13/15.
Id take the pictures, play it by ear how well she is to look at them. Even if she can't, relatives around might want to see her in good days and hear stories.
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The Captain
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Post by The Captain on Sept 18, 2014 8:43:48 GMT -5
I'm sorry your friend is going through this.
Like oped said, it's likely you will barely recognize your friend. Be prepared for the physical change, but remember the person you know is still there.
I think the pictures are a great idea.
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NancysSummerSip
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Post by NancysSummerSip on Sept 18, 2014 8:53:12 GMT -5
I love the pictures idea.
My mother was in hospice, and several friends have been as well. I'm wondering why your friend's husband won't help you out a bit by talking about it. He may be having a harder time that your friend at handling this. Of course, he's losing a near and dear one, so it's not a surprise.
Be prepared for a short visit; your friend may have little or no energy. Be prepared for sudden illness during your visit; nausea happens. Be prepared for loss of memory, both short and long term, thanks to the meds.
But most of all, be prepared for gratitude, even a small dose of it, from your friend. It may only be a few words, a look, a gesture. But you'll know. And when your friend arrives at her next destination, whatever that may be, she will both carry that spirit of caring with her, and leave some behind for you.
Thyme, we never really lose the people we love. Trust me on this one. I never used to believe it, either. But I've seen it for myself. There will be signs that you'll get back whatever you give her many, many times over.
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Deleted
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Post by Deleted on Sept 18, 2014 8:57:40 GMT -5
There will probably be a hospital bed in an unusual place like the living room or a room on the main floor. She will probably look like a holocaust survivor. Be prepared. I find it helps to keep in mind that I am visiting to remind them they are loved and have made a positive difference in the world and I will remember them fondly. They are not dying alone. Good luck.
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thyme4change
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Post by thyme4change on Sept 18, 2014 8:57:58 GMT -5
She was a skeleton when I saw her before, I can only imagine how bad it will be now.
I don't know if holding hands and crying with her will help me or not. I've never done this before. But, what I do know is that if I don't go, I will regret it forever. I will always feel like I wasn't there when she needed me. I will also always have a little denial - like maybe she didn't really die, she just moved, and didn't give me her new contact info.
I know her husband is losing the most here, and I don't want to burden him - but the day before I come, I might say to him just what I said to you - 'Hey, I've never done this before. I tend to lack any skills for comforting people. Can you frame out a little expectation so I not make her situation any worse by being stupid?' He will probably answer with something like "Just you being here will mean so much to her."
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Deleted
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Post by Deleted on Sept 18, 2014 9:03:17 GMT -5
I doubt holding hands and crying will help her. Telling her how much you love her, how wonderful she is, thanking her for what she's brought to your life, talking about how much you will miss her but never forget her...that's the kind of stuff I go with.
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Post by Deleted on Sept 18, 2014 9:05:48 GMT -5
I'm sorry, I wasn't clear. I wasn't holding hands and crying with my grandfather. He didn't know I was there. People were holding hands and crying over him.
Again. This is my experience, but I'd only visit during hospice again if 1) I knew the person was still aware and I was doing him/her good to visit. 2) I felt the need to grieve with other people.
If you are going for you, you might want to skip it. I know that my mother wishes she hadn't gone in to see my grandfather the last time. There are things you can't unsee. Sometimes it's better to keep memories intact.
I know that sounds harsh. And if my grandfather had been aware and benefiting from contact, like my grandmother before her passing in the hospital, it would be different, no matter the difficulty. But both my uncle and grandfather by hospice time were not at that point. My experiences. Obviously experiences might differ.
I think the day you want to go you ask if she is aware, if she needs anything you can provide...
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Nazgul Girl
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Post by Nazgul Girl on Sept 18, 2014 9:05:59 GMT -5
I'd just go and see her. He's probably not going to be in shape to give you much guidance. The important thing is that you care enough to come. No matter what, it's not going to be easy. Sometimes, the patient is so debilitated that you can just sit with them and hold their hand for awhile. I'm sorry that your friend and her husband, along with yourself, are going through this. I've lost two friends and a relative to cancer, and it's very difficult.
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cronewitch
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Post by cronewitch on Sept 18, 2014 9:15:53 GMT -5
Mom got a hospital bed in her living room. At first she was fine to walk to the bathroom or kitchen, then needed help. It got too much so we hired help when mom couldn't get out of bed without help. Then she couldn't make it to the bathroom so they put a potty chair next to her bed. The hospice people left medicine for her, the family kept track of it since they kept changing paid help.
If you want to take her a really nice gift buy her a sheep skin for her bed. Skin gets thin and so much laying makes bedsores and her heels might get rubbed on the sheets. I had a sheep skin with 4 pelts sewn together that covered the entire bed and was very soft I gave her. They would fold a sheet across the middle to pull her on. Costco has them sometimes.
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gs11rmb
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Post by gs11rmb on Sept 18, 2014 9:16:58 GMT -5
Please go and visit your friend. My mother died of cancer in a hospice facility at the age of 48. It was a comfort to have friends and family visit and know that she wasn't alone. As she started to drift away during the last few days and was unable to communicate, I feel strongly that she knew she was surrounded by people who loved and cared for her - that's important.
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Post by Deleted on Sept 18, 2014 9:19:51 GMT -5
Please go and visit your friend. My mother died of cancer in a hospice facility at the age of 48. It was a comfort to have friends and family visit and know that she wasn't alone. As she started to drift away during the last few days and was unable to communicate, I feel strongly that she knew she was surrounded by people who loved and cared for her - that's important. Ugh. 48?
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Tennesseer
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Post by Tennesseer on Sept 18, 2014 9:25:22 GMT -5
Acknowledge her condition but remain in the present. The pictures are a good idea.
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Lizard Queen
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Post by Lizard Queen on Sept 18, 2014 9:32:47 GMT -5
One thing I didn't realize until my dad died of cancer, is that cancer can be painful. (Okay I might be an idiot for not realizing that. ) The hospice people come to help manage the pain. Sorry about your friend, Thyme.
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yogiii
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Post by yogiii on Sept 18, 2014 9:44:42 GMT -5
Just sit next to her and maybe hold her hand. I don't think you need to say anything. She'll just appreciate that you are there.
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saveinla
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Post by saveinla on Sept 18, 2014 10:14:32 GMT -5
I lost my sister to cancer when she was 37. She had lung cancer , even though she had never smoked or been near smokers. They could not figure it out for a long time and she only had 2 months from the time she was diagnosed. She was at home hospice for 2 weeks. She had a hospital bed that we had set up in one room (it was easier for her to sleep sitting up and she was also on oxygen). At the end, all she wanted to do was talk - about everything. She also gave me a lot of advise about what to buy with regards to houses, which family member not to loan money to, how to talk to my son - just every day things. She did not look too bad - her hair was so thick that even after losing half her hair to chemo in one month, she did not have to even cover her head. She could not eat too much since she was in pain and also could not breathe, so I would sit next to her, rub her back, neck, feet etc. and also try to give her something soft to eat every hour or so. Her husband was not able to deal with the everyday things (he would constantly break down and cry), but thankfully we had a lot of people close by who could help. Like everyone says - be there for her and she will appreciate it .
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raeoflyte
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Post by raeoflyte on Sept 18, 2014 10:42:06 GMT -5
I'm sorry you're going through this Thyme.
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mmhmm
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Post by mmhmm on Sept 18, 2014 14:03:02 GMT -5
I'm truly sorry, thyme, for you, for your friend, and for all who love and care for her. She's very young. The loss is often more poignant when that's the case.
As others have said, she'll probably have a hospital bed set up on the first floor and other useful medical equipment available. She may have a bedside commode, or a urinary catheter, and may be medicated and drift off to sleep periodically. It all depends on what stage she's in and what she needs to maintain comfort.
I've held my patients' hands and cried with them. I've held family members and cried with them. Take your cues from her, hon. You've got a big heart. Let it guide you. The pictures are a great idea, IMO.
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sapphire12
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Post by sapphire12 on Sept 18, 2014 15:49:20 GMT -5
My condolences to all who have lost loved ones to cancer. I've been there too many times myself. Thyme, go see your friend. It will mean a lot to her, her family and to you. It sounds like her husband is having a hard time as well. He's feeling helpless and lost as well.
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mmhmm
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Post by mmhmm on Sept 18, 2014 16:09:26 GMT -5
I lost my sister to cancer when she was 37. She had lung cancer , even though she had never smoked or been near smokers. They could not figure it out for a long time and she only had 2 months from the time she was diagnosed. She was at home hospice for 2 weeks. She had a hospital bed that we had set up in one room (it was easier for her to sleep sitting up and she was also on oxygen). At the end, all she wanted to do was talk - about everything. She also gave me a lot of advise about what to buy with regards to houses, which family member not to loan money to, how to talk to my son - just every day things. She did not look too bad - her hair was so thick that even after losing half her hair to chemo in one month, she did not have to even cover her head. She could not eat too much since she was in pain and also could not breathe, so I would sit next to her, rub her back, neck, feet etc. and also try to give her something soft to eat every hour or so. Her husband was not able to deal with the everyday things (he would constantly break down and cry), but thankfully we had a lot of people close by who could help. Like everyone says - be there for her and she will appreciate it . First of all, my condolences for those who have lost those they love and for those who are facing this now. The talking, YES!. So much yes. So much to say and so little time to say it. The topic might not seem like something you would feel you would want to talk about if you were dying, but so often it seems as if there's a rush to get things out. Maybe to finally share the real secret recipe for her brownies no one can ever duplicate, or to tell why she won't wear red, or how much it bothers her that her legs aren't shaved and how much THAT bothers her that it bothers her. IMO and experience, the pics are good. And it's OK to be afraid. It's OK to let her know you are. Please let her be afraid, if you at all can. I know it's very hard. If her husband doesn't want to discuss this with you, it's possible that he doesn't want to discuss it with her, either. Hospice workers are amazing at what they do, but sharing the fear with someone who has shared your life and joy can make such a difference. Well said - and, welcome to MSN Money!
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GRG a/k/a goldenrulegirl
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Post by GRG a/k/a goldenrulegirl on Sept 18, 2014 16:36:37 GMT -5
Thyme, for what it's worth, these times in life are difficult for all of us. Maybe you can schedule the visit for when the hospice nurse is there? He/she can deftly facilitate the start of the visit and will then move aside when the two of you are ready to manage it on your own. Hospice nurses are a special breed -- they are as much, if not more, social workers as medical folks. And, if you can't make it when the hospice nurse is there, then try not to stress about the visit. If you really think about it, both you and your friend will want it to be genuine -- not necessarily "perfect".
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violagirl
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Post by violagirl on Sept 18, 2014 19:24:57 GMT -5
My friends father recently had a stroke. It took a week for him to die. Meanwhile we didn't know if we should go visit or hang back or what and then there was not having a clue what to say or do and the awkwardness of it all. In addition, I am not known for my ability to deal with other people's emotions so I really had no idea what to do.
But we told my friend - if you want our help, if you want us to leave - say the word and we will do what you want. So we went to the hospital. Now his Dad was unconscious but all he and his family wanted to do was talk. So we listened. There was some laughter and sometimes you just felt so bad for them that we would all cry together. We always think of crying as a huge faux pas but it is one of the more honest emotions and I dont' think should be stifled.
You know your friend's personality, but tiptoeing around the inevitable creates stress for everyone.
In my family we deal with stress by cracking jokes. We were the jolliest bunch in the ICU when my Dad had his heart attack. So in some cases, people are more prone to laughter than tears as a stress relief. Some people may have thought we weren't taking it seriously but it was our way of coping. But the first thing my Dad did when he was shocked back to life was to make a joke about going toward the light so we come by it honestly.
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thyme4change
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Post by thyme4change on Sept 18, 2014 19:43:32 GMT -5
I'm sorry, I wasn't clear. I wasn't holding hands and crying with my grandfather. He didn't know I was there. People were holding hands and crying over him. Again. This is my experience, but I'd only visit during hospice again if 1) I knew the person was still aware and I was doing him/her good to visit. 2) I felt the need to grieve with other people. If you are going for you, you might want to skip it. I know that my mother wishes she hadn't gone in to see my grandfather the last time. There are things you can't unsee. Sometimes it's better to keep memories intact. I know that sounds harsh. And if my grandfather had been aware and benefiting from contact, like my grandmother before her passing in the hospital, it would be different, no matter the difficulty. But both my uncle and grandfather by hospice time were not at that point. My experiences. Obviously experiences might differ. I think the day you want to go you ask if she is aware, if she needs anything you can provide... Because I have to fly there - my timing is pretty set. I will be in town for about 24 hours. It was all I could manage. I hate being away from my family anyway, and even when I travel for business I try to cut the trip as short as possible. But this one - I felt like if I had a limited number of hours I would feel like I could make it through. If she isn't cognizant, well, then I will just hope that my being there comforts her husband. I can imagine that I would feel better knowing that someone loved my husband enough to be there - even if it wasn't someone who was technically "my friend." And, if the whole thing sucks, I will just go down and hang out at the beach, or sit in my hotel room and surf the web. That is how old my friend is. I have many reasons that I'm having a hard time with this. One is the usual struggling with my own mortality. A big one is my irrational terror of sick people. When the kids were little, my husband would often stay home with them. I don't know what the deal is - but I know I feel helpless and I'm not very comforting. Once I stayed home with my daughter and all day I was like "Hey - want to play Monopoly?" and "Do you want something to eat?" Of course she didn't. So, I am already preparing myself for not doing that.
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midjd
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Post by midjd on Sept 18, 2014 19:45:43 GMT -5
That's how my family is, too. We suck at emotional stuff and are all sarcastic assholes... but it works out somehow Thyme, if your real-life persona is anything like you are on here, you'll be fine. Talk about fun times you had together, make some sarcastic quips (you can't help it), and just be yourself. She'll be so happy to see you and relive old times. I'm very sorry about your friend. ETA - I just saw your last post. I'm not a hugger, but I wish I could hug you. I totally understand where you're coming from re: sick people, and losing a friend at such a young age is a completely shitty situation. I'm sorry.
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Spellbound454
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Post by Spellbound454 on Sept 20, 2014 15:38:11 GMT -5
I'd say......Prepare yourself to be shocked..... but don't show it.
Be friendly and warm...and not too heavy with the conversation. Treat her like you always treat her....she is still your friend, even if she is not in a good way.
Keep it short.
I've done this a few time and its not nice.....makes no difference to the outcome but at least you will both know you were there when it mattered.
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toomuchreality
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Post by toomuchreality on Sept 20, 2014 16:21:45 GMT -5
So sorry to hear this Thyme. Something to think about... If you are going to be there any way and are up to it, think about telling her husband (or whoever is hanging around in the room with her), if they want to leave the room it's okay. You stay with her and let them know if anything happens and before you leave. Sometimes having that break to go to the bathroom, make a phone call, or just get away for a minute, helps a ton. If you're not up to it, and like having another person there, no worries! That's okay too. Good luck
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thyme4change
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Post by thyme4change on Sept 20, 2014 17:00:11 GMT -5
So sorry to hear this Thyme. Something to think about... If you are going to be there any way and are up to it, think about telling her husband (or whoever is hanging around in the room with her), if they want to leave the room it's okay. You stay with her and let them know if anything happens and before you leave. Sometimes having that break to go to the bathroom, make a phone call, or just get away for a minute, helps a ton. If you're not up to it, and like having another person there, no worries! That's okay too. Good luck I didn't think about this either way. Ugh. I am probably a little terrified to be left alone with her, but I will see how it goes. I found the pictures I was looking for. Even if she isn't able to look at them, her husband might like to see a few of them. They are from before they met. A few of them have her ex-husband, but they have been divorced 20 years - hopefully it won't cause a big problem.
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Anne_in_VA
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Post by Anne_in_VA on Sept 20, 2014 19:55:10 GMT -5
I'm so sorry about your friend thyme. I don't have any advice but am sending you hugs and prayers.
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toomuchreality
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Post by toomuchreality on Sept 20, 2014 22:14:20 GMT -5
With my dad last October, I usually liked having someone there with me, to visit too. I felt like I ran out of things to say, that he would/could remember (87 yrs). But then my family doesn't talk about being sick, or not feeling well. That was like not talking about the elephant in the room. Although he had Hospice for 3 weeks, he didn't use a hospital bed until the last 2-3 days. One thing my dad liked most of the time, was ice cream/shake. Another was ice chips/crushed ice. But if you aren't going to have a car there, taking something like that would be difficult. It may feel awkward, but you'll do fine. I'm glad you found the pictures, they will help. Your friend will appreciate the fact that you came and bothered to make the effort, even if she doesn't say it. You're a good friend, Thyme.
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cronewitch
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Post by cronewitch on Sept 21, 2014 0:45:58 GMT -5
One thing my mom wanted to do was give her stuff away, making sure everything got to who it should. We didn't want her to and refused to take things until after she was gone unless it was something tiny like a piggy bank. The piggy bank was a dog that had been her fathers. I told her she had said it was to go to DS1 and she said she didn't remember that, so I called him in and asked him and he said he didn't remember that but wanted it. We left things like that on the mantel until she order stuff gone. She would get upset about stupid things like the pictures on the mantel and tell us to get them out of here she was tired of looking at them. After it was over we took what she wanted us to have. Our family never ever would dream of fighting over things so it was really smooth. I would have loved to have the piggy bank dog but my brother wanted it and I am sure mom had said he was to get it. When we were kids we got pennies from it for milk money at school. Mom would have been upset if we argued over things so my brother will never know I wanted it.
If she tries to give you things don't take them unless her husband agrees since he should have a choice. Some people just want to finish up, but we didn't want mom in a room with no decorations. She was giving the pictures off the walls.
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