They've called in hospice...
By Jess
@JJ4Ever (4693)
United States
February 9, 2011 9:29pm CST
I have to get something off my chest today…
My aunt, my mom’s only sibling, has had MS (multiple sclerosis) for several years. I don’t believe it is the hereditary kind because she had a rather abusive marriage when she was younger that she finally got away from within the last ten years. Originally, my aunt was staying with my grandma, her mom. Things were this way for the last four years. My aunt started out by being able to get around, then she had to sit in a wheelchair most of the time and sometimes needed help doing this or that, and now she’s completely bedridden. You probably are familiar with how the disease progresses—it is so sad. I feel horrible for her, but at least she can’t feel most of the pain since her nerves no longer send pain signals to her brain. Within a month ago, my mom and grandma decided it would be best to put my aunt in a nursing home, and the best part is that she loves it there!
My aunt was in the hospital again (for at least the third time this year) this past weekend. They released her from the hospital yesterday afternoon, but they said to bring in hospice. Since family and friends can visit her at the nursing home as often as they wish during the twelve hours a day the place is open, it has been really nice for her. However, when I heard they were bringing in hospice my heart dropped. I’m not super close with my aunt, but she’s always lived close by, and our families got together a lot when we were younger. I remember the younger, healthier aunt. It’s so hard to see her this way now.
The way things go, my husband and I are usually very busy. I feel as though I haven’t always made time to go see her, even when she was living with my grandma. I can’t tell you the last time I saw her…it’s just so hard to see her this way. I’m not making excuses for myself, but part of me doesn’t want to see her now because of how hard it’ll be once she’s gone. I feel like by not seeing her, I’m attempting to protect myself emotionally. Do you understand these feelings? I know everyone hates to feel this emotional pain. I also don’t want to have any regrets, which is why I’m going to visit my aunt this week or as soon as I can fit it in so that I can say goodbye. The tough thing is that I have no idea how long she has…I hate being in this situation, but I know very soon she’ll be in a better place where she won’t have to suffer ever again!
Have you had a similar situation? How do you handle something like this? I want to be there for my aunt and my family in the best way possible, and more than anything I do not want to have any regrets.
2 people like this
3 responses
@JoyfulOne (6232)
• United States
10 Feb 11
Hi JJ4Ever. So sad! I worked for hospice many years, and I can honestly say that the family members who stayed away during it all, probably had a harder time dealing with it once they were 'gone.' It IS hard to see a family member going through health problems. If you do go and see her, it might be uncomfortable for you, but you won't later regret seeing her even though she's in bad shape. Remember too, that you don't have to verbally say goodbye, but your presence in visiting her will let her know that you care. If you feel real uncomfortable, go with your Mom.
I'm assuming she's still 'with it', and if she is, talk about family events when you all got together. Like 'do you remember when * did (whatever) at that Christmas party when I was 10? Man, I laughed so hard.' Talking about fun things you used to do when they were still vital, makes them realize that you carry happy memories of them. If you don't focus on what they can't do anymore, and remember the happy times instead, that's a good thing.
When I was doing home hospice, my patients knew their situation wasn't going to get better. One old fellow was similar to your Aunt's situation. While I would do his care, I found out he used to love to fish and hunt. We discussed that, not his mortality. Even though he knew he would never be out of bed again, or hold a fishing reel, he held good memories and stories that brightened his days. Anyways, that's how I handle situations like that. I hope this helps you some. God Bless!
2 people like this
@GardenGerty (157915)
• United States
10 Feb 11
What great advice. I can speak for the truth of it as well. That was what my sister appreciated when she was ill. She became tired of people coming just to "take care of her" and really longed for people who wanted to talk to her. I appreciate the way you have expressed this, it makes it easier to understand.
2 people like this
@JJ4Ever (4693)
• United States
10 Feb 11
This is definitely what I needed to hear from someone who has been there many times. As I read your response, I was able to put myself in the place of that gentleman. How happy he must've been to talk about the good times of his past. It's great to cherish those memories. Yes, my aunt is still completely with it, but it's so sad because she no longer has any control over her muscles, especially the muscles in her face and mouth that allow her to speak. However, I believe it was her ultimate decision to get comfortable and confront whatever the upcoming days hold for her. You'll be happy to know that I'm most definitely taking your advice! I have set up a lunch date with my mom tomorrow. It's tomorrow because I'm not putting it off any longer. Who knows what the weekend could bring. I don't want to have the "what if's" after my aunt is gone. You're so right when you say that being with them and not verbally saying goodbye tells them you're there for them till the end. I guess the hardest part for me is not knowing the "when," but again, I don't need to focus on that. Anyway, I'll be taking lunch for my mom and hopefully one of my younger sisters. All us gals are going to hang out with my aunt and chat. I think it'll be really fun!
2 people like this
@JoyfulOne (6232)
• United States
10 Feb 11
Thanks you two:-) If I may add, my one old Aunt had had a stroke, and for the last 8 years of her life she couldn't speak. She could understand though. And when we'd get to reminiscing about family funny stuff, you could see her crooked smile trying to laugh, and laughter tears at the corner of her eyes. No matter if we can't speak, we can still appreciate and be a part of the conversation. One thing I know she hated was when visitors would come and talk to each other and not make visual contact with her while they were talking (so she'd feel included.) You could see the sadness in her eyes then, and I knew she felt 'invisible.' To be included and still feel vital to your family and friends, I think it means a lot!
Glad to know you're going to go visit! Even though she won't be able to tell you, she'll treasure those moments with you and the gals! If she doesn't have trouble with vision, take some pictures with you to share with her.
1 person likes this
@rosegardens (3034)
• United States
10 Feb 11
I am sorry for you and your family. May the mercy of God surround your aunt, you and your family. She will be in a better place, without pain. Be strong!
I lost a friend just recently, and there were some that did not come to visit him because he was dying. They could not stand to see him bedridden. He was very sad they didn't come, even though he understood why.
1 person likes this
@JJ4Ever (4693)
• United States
11 Feb 11
I'm so glad your friend was an understanding person, but it's still very sad some of his family and friends didn't go to see him. I did end up going to see my aunt during lunch yesterday, I know I'll be eternally grateful for that choice. It was such a joy to see her. She greeted me with a huge smile too. That was absolutely priceless! Thanks a million for sharing your experiences and wisdom with me. You have excellent advice! And yes, my aunt will be in a glorious place when she passes away, so her family and friends can have peace in knowing that she will never suffer ever again!
@JJ4Ever (4693)
• United States
28 Feb 11
Thanks so much for your understanding and encouragement. I'm happy to tell you that I was able to see my aunt again this past week, a week after Valentine's Day. My husband and I picked out some really pretty bright yellow flowers. It was planted in a pot so that they'll live for a long time and can even be planted if desired. My mom goes there every week day, so she promised to water them for us. It worked out great because last Monday it snowed really hard. My mom and my grandma (my aunt's mom) couldn't make it to the nursing home due to the bad weather, but my husband has a truck so sure enough we were able to plow throw that snow and get there. My aunt was so happy. She had a huge smile on her face when she saw us and the flowers. I feel so bad that she has to lie there and stare at the same things all the time. I thought the flowers would brighten her day, and they sure did the trick! It couldn't have worked out better since we were her only visitors that day. She didn't have to go without family seeing her for a day after all. My mom visited later and told me how pretty the flowers were. She also told me while she was there feeding my aunt, one of the caregivers came in a complimented my aunt on the pretty flowers. The woman asked my aunt where she got them, and my aunt said, "From my niece!" So cute...my aunt doesn't talk often due to her condition, so that meant the world to me! I'm so glad we could make a difference in her life if only for a day! That's what means so much. No regrets!!
@rosegardens (3034)
• United States
12 Feb 11
That is terrific! I am very happy you had a good experience when you saw her and that she is able to communicate. God bless you!1 person likes this
@JJ4Ever (4693)
• United States
15 Aug 11
That's a really natural feeling when someone passes away. I know this may sound silly, but for example, a little over three years ago, my cousin passed away of CF (cystic fibrosis). I was so sad for her passing, but also glad she didn't have to suffer anymore. However, then I got scared because I started looking into the CF a little bit more to learn what she went through. I self-diagnosed myself to have the same thing, which wasn't exactly true. Although it can be hereditary, I don't have CF; I might have some symptoms, but that doesn't make it so. I know that sounds strange, but I was overwhelmed with emotions and mixed feelings toward her passing that I wasn't really thinking straight. So I completely understand where you're coming from!
@JJ4Ever (4693)
• United States
18 Aug 11
I'm so sorry about your mom. My heart goes out to you, my friend. I think the suddenness of things is the worst. It's a little different when I'm expectant of what will happen to my aunt because of her condition, but with your mom that is so hard. I hope you've been able to cope ok. May your family and friends gather around you so will have plenty support during this tough time.
