Visiting a dying friend

[D-Lish]

My best friend from childhood is dying of MS, I don't suspect she'll last more than a couple of months, if that. It's been a terrible, terrible disease to her.

 

We've been friends since we were 5 years old. Best friends and neighbours into our late teens- she was my maid of honour and I was hers. When she married, she moved away with her husband- so spending time together became difficult. We've always stayed in touch, and I knew she was sick- but I didn't know she was THIS sick until her sister contacted me and said I needed to go say good-bye to her.

 

The last we spoke was a couple of years ago- it's one of those things where someone is in your heart, but your lives get busy and you take for granted the time you have left with people you love. She withdrew completely as she got sicker and it has apparently been a pretty rapid declination over the past year- going from cane, to wheel chair, to being bed ridden.

 

I'm going up to see her on Friday, I've been speaking to her husband because her speech is impaired.

 

I am not sure how to act, and quite frankly I don't know what to expect. I've never had to do anything like this before. I'm told her cognitive functioning is wavering, so I may not even be able to have a coherent conversation with her at all. I know I will cry and I have a great fear that could upset her. Her husband has gone through enough pain, he doesn't need to see me cry and feel like he has to console me as well. He's a great, great man, he's been a tremendous husband to her.

 

I feel so guilty that I didn't know how sick she was getting. Her sister said she asked her family not to tell anyone because she didn't want anyone to see her in such a terrible state.

 

MS is such a terrible disease.

[carhill]

My sympathies. IME, having done such visits, I've always gone with the flow. If the relationship is a friendship, that's the flow.

 

I got a strange feeling with the last friend, even though she didn't let on, I could tell she was struggling with something, both in her behavior and physical appearance. We talked a lot about her son and the good stuff in her life and, before I left, even though it was at the dentist's office, I still gave her a hug at the front desk and told her I loved her. She would be dead three months later.

 

I keep it simple, honest and caring and let it flow. Whatever happens, happens. Best wishes and I hope the visit is what you and she hope it to be.

[writergal]

D-Lish sorry to hear about your friend's MS condition. You're right. It IS a terrible disease.

 

Maybe write her a letter to read aloud to her, that reflects on the life-long friendship you two have had, how much you have cherished having someone like her in your life, recount some funny stories of the two of you, share some fond memories, and tell her how much you care about her and love her as your friend and how grateful you are to have had her in your life.

 

I'm sure she'd enjoy hearing some of those things from you since you don't know how much time she has left. Just a suggestion. Do whatever makes you comfortable on Friday to reconnect with your friend again. And know that she will be happy to see you. Good luck on Friday. *hugs*

Edited August 27, 2014 by writergal

[D-Lish]

D-Lish sorry to hear about your friend's MS condition. You're right. It IS a terrible disease.

 

Maybe write her a letter to read aloud to her, that reflects on the life-long friendship you two have had, how much you have cherished having someone like her in your life, recount some funny stories of the two of you, share some fond memories, and tell her how much you care about her and love her as your friend and how grateful you are to have had her in your life.

 

I'm sure she'd enjoy hearing some of those things from you since you don't know how much time she has left. Just a suggestion. Do whatever you makes you comfortable on Friday to reconnect with your friend again. And know that she will be happy to see you. Good luck on Friday. *hugs*

 

Thanks, you always give great advice.

 

I am nervous about the fact that she is incoherent, experiencing bouts of dementia. I'm thinking I could just be sitting there holding her hand according to what her family has told me.

 

My dad was actually their family doctor, and her dad was/is our family lawyer- our families grew up across the street from one another. Our parents are long time friends as well.

 

It's a long history- as she was diagnosed with MS at 12 years old. She began falling down and losing her balance a lot- and one day in gym class she fell off the balance beam and was taken to the hospital. I remember that day so clearly. That was back in the day when Dr's made house calls- and when one of my dad's patients went to the hospital- he got a call and went to them. That's how it used to be back in the day- my Dad was never home, lol. They also didn't rush you in and rush you out of the hospital- I remember she was there for a week and you didn't have to get referred to a specialist- they came to you in the hospital right away!

 

She was diagnosed with early onset MS. She experienced a lot of "bouts" with a whole host of bothersome symptoms as we grew up- but she was such a strong, vibrant girl- and I never imagined that she'd decline and die by the age of 40.

 

I'm just talking it out- as I tend to do on loveshack about things. Writing things out is cathartic, such a great coping mechanism.

[Hope Shimmers]

I'm sorry you are going through this. I lost my best friend to ovarian cancer in 2002 (she was in her early 40's). We too had not been in regular communication before that.

 

Don't plan anything to say to her. You aren't going to be reminiscing about old stories, etc. You are just going to (hopefully) let her know you are there with her, and listen to her. Be there for whatever. We spent a lot of time in silence, but she also talked about the past (when she could) and asked me to make her meals. Let HER dictate this - don't push forward with a bunch of stories. Just be there and respond. It's okay if all you do is hold her hand and be there!

 

If she is receiving home hospice care that is great. Take shifts to be with her to relieve her husband/family and to give you time with her and communicate with the hospice personnel about her pain level. I did this, and it lasted about 72 hours before she died. She just wants to know you're there - don't worry about ANYTHING else than that, and don't let your worry keep you away. A much worse thing would be for you to not be there.

[D-Lish]

I'm sorry you are going through this. I lost my best friend to ovarian cancer in 2002 (she was in her early 40's). We too had not been in regular communication before that.

 

Don't plan anything to say to her. You aren't going to be reminiscing about old stories, etc. You are just going to (hopefully) let her know you are there with her, and listen to her. Be there for whatever. We spent a lot of time in silence, but she also talked about the past (when she could) and asked me to make her meals. Let HER dictate this - don't push forward with a bunch of stories. Just be there and respond. It's okay if all you do is hold her hand and be there!

 

If she is receiving home hospice care that is great. Take shifts to be with her to relieve her husband/family and to give you time with her and communicate with the hospice personnel about her pain level. I did this, and it lasted about 72 hours before she died. She just wants to know you're there - don't worry about ANYTHING else than that, and don't let your worry keep you away. A much worse thing would be for you to not be there.

 

Thank you for the advice:love:

 

She has been moved to a care facility. I'm driving out to meet her husband at their house which is about 3 hours away- then he is taking me to see her. I know he wanted to see me first to prepare me for what to expect.

 

I know I will just go with the flow. I was discussing this with a co-worker today and he told me not to go- that seeing her like this is not the memory of her I want to have. He really didn't get it when I said that I couldn't imagine being on my death bed and not having my best of friend of 35 years not come to visit me.

 

We pretty much hung out EVERY day from the age of 5 to the age of 20. She was my maid of honour and I was hers. She was my childhood best friend that I still consider to be my lifelong best friend. I just feel like crap that we lost touch a bit over the past few years- I really took time for granted.

[writergal]

The reason I suggested the letter is because I wrote one for my dad that I read to him as he lay dying of his cancer at home in our house. It helped me cover 21 years of our lives together - dad and I - and he was still conscious when I read him the letter. I was glad I did b/c it gave us both closure.

 

Do whatever you feel like doing. Write a letter. Don't write a letter. Go with the flow and see how you feel by Thursday. Let life inspire you to say goodbye to your friend in a way you feel comfortable doing. Your friend was lucky to have you in her life, D-Lish. It sounds like you both had a wonderful friendship. Let us know how it goes for you ok? Wishing you much love and light.

[whichwayisup]

Bring her pictures. Go through photo albums and pick out a bunch of fun pictures of you both throughout your years together.

 

Sorry to hear she has MS. That's tough and to be so young, how awful for her to go through and of course her family who has no choice but to deal with it. It's not easy seeing someone you love and care about suffer like that.

 

That guy just doesn't get it and probably more that he can't handle that type of stuff which is why he told you not to go. I'm in your camp on this, it's so important to show love and support.... and sadly I will be in your shoes eventually as I have 2 friends who have MS and a close family member who has Parkinson's.

 

Let us know how it goes.

 

My thoughts are with you D.

[D-Lish]

The reason I suggested the letter is because I wrote one for my dad that I read to him as he lay dying of his cancer at home in our house. It helped me cover 21 years of our lives together - dad and I - and he was still conscious when I read him the letter. I was glad I did b/c it gave us both closure.

 

Do whatever you feel like doing. Write a letter. Don't write a letter. Go with the flow and see how you feel by Thursday. Let life inspire you to say goodbye to your friend in a way you feel comfortable doing. Your friend was lucky to have you in her life, D-Lish. It sounds like you both had a wonderful friendship. Let us know how it goes for you ok? Wishing you much love and light.

 

Thank you WG, I have started writing out a letter, which is sadly also an eulogy - but you think along the same lines as me with regard to letter writing. I get emotional in person and I can't articulate things as well as I want to. I have three days to sit and contemplate, and put everything down on paper. I can get out everything that is important to say and not miss anything.

 

I'm soooo sorry about your dad, that's heartbreaking.

 

Bring her pictures. Go through photo albums and pick out a bunch of fun pictures of you both throughout your years together.

 

Sorry to hear she has MS. That's tough and to be so young, how awful for her to go through and of course her family who has no choice but to deal with it. It's not easy seeing someone you love and care about suffer like that.

 

That guy just doesn't get it and probably more that he can't handle that type of stuff which is why he told you not to go. I'm in your camp on this, it's so important to show love and support.... and sadly I will be in your shoes eventually as I have 2 friends who have MS and a close family member who has Parkinson's.

 

Let us know how it goes.

 

My thoughts are with you D.

 

You rock wwiu...

 

I pulled out pics today as well. I don't know what state she will be in, but I can share them with her husband. My dad found some old school polaroids of the two of us when we were kids. I'm going to take those with me Friday.

[d0nnivain]

Hold her hand. Talk to her. It's OK to tell her you are sad. Reminisce about the good times. Ask her Qs. Let her talk & don't interrupt. Tell her how important she is to you.

[D-Lish]

Hold her hand. Talk to her. It's OK to tell her you are sad. Reminisce about the good times. Ask her Qs. Let her talk & don't interrupt. Tell her how important she is to you.

 

Thank you, I will. I don't know how coherent she will be- so there is a spectrum of possibilities that I will just have to roll with.

 

I held my grandmothers hand as she was dying and experiencing extreme dementia. I was much younger, 20 maybe- and she wanted to die at home- and there were cousins, my grandpa, aunts, uncles- you name it- bustling about the house. Making food, cleaning, doing everything else but going into that room and sitting with her. I think some people just can't handle it- and it's a time to just handle it for the sake of someone else besides yourself- even if it makes you feel uncomfortable. No one besides my dad and mom, and myself actually went in the room with any sort of confidence to just sit quietly with her and hold her hand as she lay suffering and slipping away. I remember thinking my extended family- that we were never close with to begin with- were a bunch of dicks.

 

That was different for me because I saw it coming a mile away, I was around her as she got sick. I also think you understand as a young adult that your grandparents are not going to be around forever.

 

The last time I saw my friend, she was still mobile and pretty vibrant. I'm going to walk in remembering she was completely functional and coherent the last time I saw her. It's not "comfortable" to go see her- but for crying out loud, SHE'S DYING. I've contacted some of our old friends that were part of our old gang- but have lost touch with her, even though I've always stayed in touch with her and them... They don't want to make the trip- they're busy.

 

I guess I get it, but at the same time- I don't. They remind me of my stupid extended family bustling around the house trying to be busy and appearing concerned and helpful - but no one wanted to go "into that room" and face reality and give some peace to someone that meant something to them.

 

You gotta go into that room because it's not about you and how it makes you feel uncomfortable. The person that is dying needs you to come into their room.

Edited August 28, 2014 by D-Lish

[d0nnivain]

You are right about your approach to death. You are also a good friend. I hope you get to actually have a visit with her. But even if you don't think she knows you are there, know that she does.

[D-Lish]

You are right about your approach to death. You are also a good friend. I hope you get to actually have a visit with her. But even if you don't think she knows you are there, know that she does.

 

Thank you, I will update after the visit tomorrow. I hope we can have a little coherent time together.

[bubbaganoosh]

I was lucky to have friends in life but really lucky to have two best friends.

 

One I met when I was in 9th grade in high school. From day 1 we were best friends and when we graduated we went in the army together and I only saw him once there but always wrote and kept in contact.

 

When we got out he was best man in my wedding and I was his. Twice actually when he remarried. All in all 40 years

 

Then he got sick and when he was in the hospital, I had no way to see him since I was on the west coast and he was on the east. I knew it wasn't good. His voice was weak and his family was keeping me informed. I called him and talked to him like everything was cool. He and I liked the same music so I would send him cd's full of music.

 

Then the day came that I dreaded. I got a flight back east and being that his family was like my second family, when I got there, I was the connection they had with him and the hardest thing I ever had to do was supporting his family and I didn't mind one bit. I was there for them to give support and they in turn supported me.

 

I had to give the eulogy and I never wrote a thing down to say but just spoke from the heart and let everyone know what kind of man he was and I had a hard time getting through it but I did.

 

Point is there isn't anything you can do about her and her condition but the one thing you will have is memories that no one can take from you and you'll consider yourself the luckiest of the lucky because you had such a great friend and it doesn't matter that you haven't seen her in a while, you had her in your mind and heart all this time.

 

Yes you will be upset and no doubt shed tears. Don't deny yourself letting your grief or sorrow show. Her husband will expect you to show it because your human and he will give you the shoulder to lean and cry on because when the day comes that he has to say goodbye to his wife, you in turn will have a shoulder for him to cry on and have comfort.

 

I also have another best friend that I have known now for 40 years and he's 14 years younger then me and I keep reminding him that now that he's in his mid 50's that he needs to be more careful with his health because he's at that age and at times I pester him about it because he has a habit of pushing it to the limit and I already told him that I had to bury one best friend because of health reasons and have no intentions of burying someone before his time because he wont slow down.

 

Please don't hold back your sorrow and just remember the good times you had with her and it will help you.

 

Hope this helps a bit.

[Hope Shimmers]

With all respect ... what I think I learned from Sheri's death was that the letters and photos reminiscing were really more for the person being there during the end than for the dying person. Sort of in the same way that a funeral is more about the living than the dead, I think those memories are not primary in the mind of the person on their deathbed. It's just my observation for what it's worth.

 

I know that during the time I spent with Sheri during what turned out to literally be her last days, she was not thinking about/interested in reminiscing. Every once in awhile a past event would come up in her mind and she would mention it, but we didn't spend our time looking through photo albums or reading letters.

 

She had end-stage cancer but no cognitive/mental impairment (which is very different than the OP's situation). Her hospital bed was pushed up against her living room window so she could look out. She had spent many hours looking at the birds (birdfeeders were set up right outside the window) and she wanted to talk a lot about the pair of cardinals who showed up every day.

 

I let her lead the conversation into past events, which she sometimes did, but she didn't delve into it for long.

 

The hardest part was both of us admitting that she was not going to be around next month or even next week. When she started talking about that, I asked her what I could do, and she asked me to check on her daughter every so often (who was 5 years old at the time) and I said I would. I think that is what is on the mind of someone in that position - getting reassurance that their loved ones will be taken care of. That is just my two cents.

 

Having said that, I think the photos/letters would be comforting at some point to the family.

 

I wish you the best OP and I'm sorry about your friend.

Edited August 29, 2014 by Hope Shimmers

[D-Lish]

Thanks everyone.

 

I just got back from seeing her. Pretty heart-breaking to see such a vibrant girl trapped in such a fragile body. I was lucky that she was relatively coherent. Bouts of confusion and memory loss- but we were able to reminisce and even laugh a lot. She can't move, and her speech is laboured. She would forget where she was at times - but she still had her sarcasm.

 

MS is such a terrible disease. Her husband is such a wonderful man. He's been caring for her like her nurse. Feeding her, changing her, bathing her and maintaining the house while still working a demanding job. Having her in a care facility is difficult, but it's necessary for her to have the full time care- and he is so wiped, he needs some respite.

 

She didn't see me at first because she was focused on her husband coming into the room- but when she focused on me, her face lit up with the biggest smile and I hugged her and we both cried. There was no issue with recognition.

 

As bad as she is, I think I can still get a couple of visits in, perhaps more before she succumbs to dementia. This has taught me not to take time for granted when you love someone.

[writergal]

Thanks everyone.

 

I just got back from seeing her. Pretty heart-breaking to see such a vibrant girl trapped in such a fragile body. I was lucky that she was relatively coherent. Bouts of confusion and memory loss- but we were able to reminisce and even laugh a lot. She can't move, and her speech is laboured. She would forget where she was at times - but she still had her sarcasm.

 

MS is such a terrible disease. Her husband is such a wonderful man. He's been caring for her like her nurse. Feeding her, changing her, bathing her and maintaining the house while still working a demanding job. Having her in a care facility is difficult, but it's necessary for her to have the full time care- and he is so wiped, he needs some respite.

 

She didn't see me at first because she was focused on her husband coming into the room- but when she focused on me, her face lit up with the biggest smile and I hugged her and we both cried. There was no issue with recognition.

 

As bad as she is, I think I can still get a couple of visits in, perhaps more before she succumbs to dementia. This has taught me not to take time for granted when you love someone.

 

Aww D-Lish, I'm glad to hear that your visit with your friend went well.

[D-Lish]

Aww D-Lish, I'm glad to hear that your visit with your friend went well.

 

Thanks, I'm relieved she was more coherent than I expected- so it gave us some important time together.

 

MS is a terrible disease.

[writergal]

Thanks, I'm relieved she was more coherent than I expected- so it gave us some important time together.

 

MS is a terrible disease.

 

I'm really happy for you both. :-) I'm happy that she was able to recognize you, so that the two of you could reconnect and reminisce with each other today. I hope you'll be able to visit her a few more times too.

[todreaminblue]

I am glad your visit went well d lish....... you are a good friend to her...I am sorry your friend has ms.....it is horrible....i am glad your friend has a friend such as you you and loving family who stick by her....made me a bit teary ...rock on d lish....i am not good with death

 

 

having strength for her and being strong for her when you see her.... is a beautiful thing d lish...that you make her smile even more beautiful........deb

[carhill]

As bad as she is, I think I can still get a couple of visits in, perhaps more before she succumbs to dementia. This has taught me not to take time for granted when you love someone.

 

Happy to read you had a positive visit. As a dementia caregiver (past), if possible and appropriate, please do visit her post-onset. Dementia patients can perceive more than may be apparent. Even if not aware of specifics, your presence is important. IOW, even if/when she doesn't recognize *you*, specifically, she'll still recognize a person being there with her, and IME that's pretty valuable. Good luck!

[ja123]

(((((((((((((( D-Lish & Your Friend ))))))))))))

 

 

It's soooo good that you went even if it was a hard thing to do. Some people can't visit hospitals at all, and I'm sure it meant the world to your friend (and her husband) that you were there.

 

 

Giving and receiving love is all we have at the end of the day.

 

 

It really puts things in perspective, eh?

 

 

When my friend died of cancer, even though the incoherency or dementia sets in, they are still very aware of what's going on around them, although they might not be able to express it. So be mindful of your energy when you are in the room with her for those later visits.

 

 

The dying give just as much back to us as we to them, I found out.

 

 

It is so sad that your friend's time is coming sooner than anyone would want, but it is the cycle of life and we all must go one day.

 

 

Sometimes reading the Desiderata or some such words can also help.

 

 

Peace, Prayers, and Love ...

[Sugarkane]

Sorry for your loss. My grandmother died last week after having dementia for a few years. It feels like she's been gone for a while because she's been ill for ages. My dad never wanted us to go and see her. I miss her a lot. She didn't get to meet my daughter.

[D-Lish]

(((((((((((((( D-Lish & Your Friend ))))))))))))

 

 

It's soooo good that you went even if it was a hard thing to do. Some people can't visit hospitals at all, and I'm sure it meant the world to your friend (and her husband) that you were there.

 

 

Giving and receiving love is all we have at the end of the day.

 

 

It really puts things in perspective, eh?

 

 

When my friend died of cancer, even though the incoherency or dementia sets in, they are still very aware of what's going on around them, although they might not be able to express it. So be mindful of your energy when you are in the room with her for those later visits.

 

 

The dying give just as much back to us as we to them, I found out.

 

 

It is so sad that your friend's time is coming sooner than anyone would want, but it is the cycle of life and we all must go one day.

 

 

Sometimes reading the Desiderata or some such words can also help.

 

 

Peace, Prayers, and Love ...

 

Thanks for all the input:love:

I feel so horrible for her husband. This is not something that anyone should have to go through. I sensed a lot of anger in him today- just under the surface. He's got her family giving him grief for the care facility, telling him she shouldn't die in a facility and needs to do so at home- but they visit one day a week- and he's changing her diapers, tending to her every need, and raising their 13 year old daughter 24/7.

 

He vented a little, but I sensed he wanted to vent more. Can't imagine what he's going through.

[ja123]

It must be extremely hard on the husband with everything you've listed above.

 

 

I hope he can find more support for himself during this time: a bereavement counselor for himself and daughter, home-cooked meals sent to his home, concrete support from his family in helping to maintain his household, daughter's schooling, errands, etc.

 

 

It's so overwhelming. And what a shame that her family can't be more supportive and helpful.

 

 

Perhaps a nurse or doctor could explain to them that at the last stages of life the best palliative care is offered at the hospital and it is in her best interests not to move her. This will back the husband up.

 

 

(((((((((((((( Thoughts and prayers to all. )))))))))))))))))))))))