My mother is receiving hospice care. I can't stop crying as I watch her go through this. What should I do?

After a grueling and exhausting day, I had finally settled in for some down time when I got the text to "come now". I ran over. Sometime between 8:00 and 10:00 pm, mom died.
It is 3:11 AM as I type this. I won't be able to rest my mind until I get this out. A very nice hospice nurse came. I asked her to "make sure" she was gone. She assured me she was. I still was in a state of disbelief although I knew the nurse was right. I was about 90% sure... but still had that little bit of doubt. It was only after a few hours of feeling her body cool down that I believed it. In that time, I said what I felt I had to tell her (they say hearing is the last to go) - I kissed her, held her hand, hugged her, then rinse and repeat a few more times while we waited for 2 very professional looking and kind young men wearing ties at 12:30 AM and driving nice black SUVs to come for her. One handed me a rose. He also gave me a bear hug which I accepted with my whole heart and gave back the same.
I'm glad it happened late at night because my mom was always a private person, and she wouldn't have liked the commotion outside during the day.
It's very surreal. For the past 6-1/2 years, mom became my partner in crime, my responsibility, and finally, like my child. Dementia is a bitch and don't let anyone ever tell you differently. When she was diagnosed in 2011, it was like being told she had arthritis. Doctor was matter-of-fact, and she and I looked at each other, shrugged our shoulders, and figured it was old age forgetfulness. I couldn't have known the road we would travel, the crucial decisions I would have to make on her behalf which were pretty constant, the time consumption, the patience I'd have to have, or the wear and toll it would take on me back then. So to say I'm a little relieved it's over is not a lie. And to tell you all that I will remember her at her prime is not a lie either. The woman dying in that bed was nothing but a shell. MY mother will always be dressed to the nines, with perfectly coiffed hair, elegant earrings, and Shaklee Cola Frost lipstick. She will always have her wedding ring (which she lost a few years back) shining on her finger. She will always have bracelets on her wrists and costume jewelry matching her beige (her favorite color to wear when I was a teenager) outfits. Her jewelry 'wardrobe' was pastels as she became older and the disease began to take hold. Pastels - blue, aqua, pink, purple. She is the woman who wears a Christmas apron and flies like Tinkerbell around the kitchen on Christmas Eve - her food would put a 5-star restaurant to shame. She will forever and eternally be cooking something from scratch, and laughing so hard at her own silly jokes that it's contagious. She may even snort and then laugh harder at that as tears fill her eyes. She could be comedic. She will always have that naive innocence and pleasant warm nature. (Think the innocence and purity of Edith Bunker, no lie) - oh, and she had a major thing for flowers. Real, silk, didn't matter... I joked her house in FL looked like a Greek funeral home. This was a woman who EMBRACED caring for her husband and daughter. Embraced it. I have family video of mom and one of their dogs running on the beach. I have video of her sharing her first Christmas with dad in 1941... and one of her swimming like a mermaid in a Miami hotel pool with her sisters wearing a swim cap and so many other moving pictures of this woman living a life most of us would envy. This is a woman that remained faithful through the decades - 67 years married. The way marriage is supposed to be. All that made my mother that woman began to die a few years ago. Her spark, humor, wit, abilities... all fell away. As hard as it was on me, I know it was harder on her. This past couple of years we dealt with a broken hip, broken pelvis, and a few weeks ago; bad fall on a tile floor. A person can only rally back and recover so many times. Mom's body was tired and worn.
So where is she now? On my shoulder? With the stars above? Having a family reunion? Is she everywhere? Nowhere? See, ENERGY CANNOT DIE - it just transfers - and this eloquent lady had an abundance of it. I guess this is where faith really comes in. You see, I asked dad last night to please take her in time for Valentine's Day.
He answered. And you know what? I knew he would. The man has had my back my whole life. I knew he would come through. Since i have not slept tonight I am going to come on later tomorrow. I am okay. I fell apart already, then I was okay. The coming days will be a repeat of that, I'm sure. I would like to extend a special thank you to Holly. Holly cared for mom as though she were her own mother. Holly kept the ship from sinking, and cared for my mother intimately without blinking an eye.
Thank you all for being such a wonderful support system. My father told me something I have carried with me. He was a very intelligent man. He used to tell me, "Paula, in the end, all that matters is love."
As always, my father was right. And you have all shown me and mom great love.

Wishing you strength, Nikki. Hugs.

Nikki, so sorry to read about your Mom and how soon her journey will go into the final chapter.

I am an only child, also, and my Mom was 98 when she passed.   After my Mom passed, my Dad wanted me to get their house ready to sell, as he wanted to move to Senior Living.   So that kept me soooo busy I couldn't think about my Mom not being here.

But I know the feeling when my Dad, also in his 90's, had to eventually move from IL into Assisted Living.   His passing caught us all by surprised.   I was Daddy's Girl, and he had taught me about taking care of things if ever I was on my own.   That was the best gift ever.

Ah yes, the "what ifs", I think we all go through that.   I know I did.   But we need to realize that we were thrown into a situation where we didn't have any training. So we did the best we could with the knowledge we had.   My folks had passed last year, they both had a wonderful long life.   I am still exhausted.   I am 70, so I feel 90.   I need a nap.

xinabess - yes it's different for only children, isn't it? Easier in some ways because nobody is fighting us but in another way it's a lot scarier. Our family was small to start with. Dad, mom, and me. Dad died in 2009. Mom and me... now mommy going. "Mommy" because she is my mommy inside my heart and at my primal core... I never called her 'mother'. I called her ma, mom... but that primal child in me is screaming mommy is dying... the thing about moms is that nobody on planet Earth can love you the way your mom loves you. You can be the ugliest fool in the world and your mom thinks you're beautiful. You can do something awful and mom will rally to your side and defense. It's a mom thing. When I had a problem I went to my parents. Now I guess I am supposed to, finally, grow up at age 50. I still feel 30 but my body feels like 70 today.

Oh, Nikki, I am so moved by your post. I am also an only child and I am very close to my mother. She is 84 and recovering from stroke. She is in pretty good shape considering, but still it is heartbreaking to see her lose so much vitality and independence. I am terrified of being where you are, which will, of course, happen. My thoughts are with you.

My mom is on hospice and is home with a live-in caregiver 24/7. I live across the street and I have been really struggling to see her dying - she doesn't have long. She is almost 94 years old with advanced dementia. She is on liquid morphine and hasn't eaten in almost 2 days. No drink either. Hospice says it's natural but I'm falling apart. I went to see her today and looked in on her as she was sleeping (on morphine) - she looked dead already... her color is terrible, her eyes are vacant, we are losing her. I am an only child. I am losing her. It's unbearable for me. I am 50 years old and I feel like I am 15 again losing my mother as a kid.  I will soon be an 'orphan'.  Nobody will love me like her and dad did ever again.  Nobody.  Every old argument surfaces in my memory. Every twinge of guilt sparks inside my head. The 'what if's' and the regrets... the times when she wanted to be with me ALL the time and I resented it... I didn't understand the disease when she was in the mild/moderate stages. I didn't realize that this was terminal. I know so much more now. I do forgive myself, but I stopped her appetite stimulant pill when hospice came on board because to what end am I keeping her sitting in a chair all day confused, on psych meds, with no quality of life? This is not the way she would want to live. I know that much. I pray to God that by letting nature take it's course I am not making a mistake. She has a DNR in place. Side note: she also has old compressed fractures in her vertebrae that have flared up. Caregiver cannot move her an inch which calls for morphine under tongue now every 2 hours to keep mom out of it. She's not going to rally back from this. The hospice nurse said days to a week now. I feel like I am in a horror movie... I am not ready for this one bit. I am rambling now, sorry - I need to get cremation in order and prepay that, I need to call the priest for mom... I need to realize... it's getting real.

Is there a difference between Palliative care and hospice?

if your mom is still around you should spend as much time with her as possible . tell her you love her as much as you can . give people their flowers when they are alive because they wont need them when they have gone on to the next life.
I love you Mom don't have to just be on mothers day or her birthday you should say it everyday and night because you never know when you will see them again. and if you mom is in the hospital go visit them no matter how far the hospital is.

It is never easy watching your love one suffer, but what has help me is to remember that there last moment is depenentt on your comfort and love and your inner strenght to keep them going, and there reason is not for them to keep on going but for the love ones they know they would leave behind.... so if they see you strong then they know they will be ok..... even if all things seem bad at that moment

I know, its so difficult- im mourning my moms death and she is still alive---
so many tears-cry- yes u should- crying helps-its a way the body can release some of the pain and hurt u r feeling- i send u huggggggggggggggggss
and love- k

Kimackay, so sorry that you too, are going through this terrible journey. And that is what it is , a terrible nightmare journey. It is a roller coaster ride with our emotions and there is no right and wrong way because each instance is different. I'm retired and my husband helped me care for my mother . My father had a heart attack and then another that killed him. We were shocked and saddened but did not go through as much emotional pain as in the long time of dying with my mother. I have so much empathy for those of you going through this right now. May God guide you through this and give you strength as he did me.

Bless you for hanging in there. I'm in the same position. Mom doesn't want to go to a facility. At this time I have no option. Guilt squared. But there comes a time you have no choice. At this time because of the situation I am on anti-depressants and anxiety meds. Keep in touch with your primary doctor and any other help you need.
I only have my primary because I am unemployed and can't afford a counselor.

Supersensitive, it is very very painful watching your loved one die. I know from personal experience with my own mother , caring for her at home. My mother did not want to be anywhere but home. My doctor helped guide me to hospice. Hospice provided palliative care that was markedly better than hospital care. One can choose home, a nursing home facility, or in some instances, an actual hospice facility. I chose home until the last two days when my mother needed round the clock help. I was more concerned about my mother's comfort as she slowly went through the dying process. No on knows how long the dying process takes even physicians or nurses don't know this. I was also concerned about eliminating my mother's pain and making her comfortable. Hospice did this very well. When she needed more pain medicine, the hospice doctor immediately prescribed it. The whole dying process seemed to take a long time. I was exhausted caring for her and getting up twice a night to turn her. It took me a long time to get over feeling like a depressed zombie with dark circles under my eyes after she died. Yes, you are torn between wishing it would be over and not wanting it to happen. We all go through this and it is a terrible feeling. I took St John' Wort whenever I was too depressed and ate nibbles of dark chocolate to try to have an up day . I must say it was a long nightmare but it does come to an end and after 2 months and a half, I feel almost normal. You will come through this . Be strong. I will pray that God will give you strength and be with you through this trying time.

Lilli put it best....cry when you need to, I am also going through terminal lung with my Mom. I put on my happy face while I'm with her but am a wreck when I get home. It's okay. Hopefully you have a wonderful husband like me and family that is also supportive. I have cousins that are terrific. Being an only child ....they are such a blessing.

Debbie I am sure that you are going through a lot more than just tears. It is a very stressful time that no one can understand unless they have been there. It is hard to see your loved one dying day in and day out. I had hospice come to the house to care for my mother. I tried to be cheerful and happy when in the room with my mother and sometimes barely make it into the hall before tears would fall. Tears wash away your body;s stress. My doctor told me that the tears were good. I needed to get rid of all the stress or more problems would develop. So cry all you want when you are away from your mom. You will feel exhausted but you will then be able to sleep. Hospice is such a God send to take away the pain and have gentle loving care available. May you go through this sad time of life with knowledge that there are so many of us out here thinking of you. Do whatever you need to do to help you get through this.

I cannot stand visiting my mother in the hospital just sitting in the room watching my mother waste away and die. It is so incredibly painful I cannot bear anymore. What is the purpose of subjecting families to this gut wrenching horrendous event? If I stay away I feel I am letting my mother down... My mother did not want to die in this way. When I agree to Palliative care I had no idea it was going to be so long and so terrible for my mother. I thought my mother would go quickly. I feel so badly seeing my mother in a hospital bed slowly dying. I do not know how much more I can take. I am devastated and do not know how much more I can take. Please help I need a friend.

I cannot stand being in the hospital just sitting in the room watching my mother waste away and die. It is so incredibly painful I cannot bear anymore. What is the purpose of subjecting families to this gut wrenching horrendous event? My mother did not want to die in this way. When I agree to Palliative care I had no idea it was going to be so long and so terrible. I thought my mother would go quickly. I feel so badly seeing her in a bed slowly dying. I cannot take it anymore.

When my mate was diagnosed with cancer,I tried not to be on to much of a downer in front of him,though we did cry together from time to time.I cried every day for 5 years.We had hospice who was wonderful.I gave myself 3 months after his death to get over it-that didn't work either.Now the crying is mostly on holidays and special days.I would say if you weren't crying something is wrong.Love and compassion is a good thing,don't hold it in.

Deb~ Unlike the many reply's that were given, For me, Hospice Care was great, as I found these people to be very special and comforting to both my Mom who eventually passed from Alzheimer's complications as well as to me-her 2ndary caregiver.

The flip side is something we all know, and has been addressed. Your emotions -such as crying- to me does sounds very normal. If possible, try to refrain from showing them to your Mom when with her however, as you never know what she can pick-up on.

Be strong during this dark time~

Hap

I'm sorry to hear you're going through this. Is there a chaplain or counselor affiliated with the hospice you can speak to? This might help you to get some direct support. Like the others, I'll say this is normal; loosing your mom is tough at any age. Having been through this with my dad and watching my Mom help her own Mother, I suggest that you try very hard not to cry in front of your parent but remain cheerful and loving. Break down later or any time you need to! Moving into care-giver mode and doing stuff for them while you're with them will help YOU but they might want you to simply BE there. Reading to my grandma really soothed her anxiety and helped her sleep more soundly; I think it was hearing a familiar voice.
All my best to you and your family.

Debbie, bless your tender heart! I just had to put my Mom in a nursing home a week ago due to constant falls and alzheimers. I've been crying ever since I moved her and struggle to hide those tears from her on my visits. I can't even completely imagine the grief you are going thru, but I think all of us that have aging parents empathize with you and can understand how difficult this must be for you to go thru. Just know that you are a good daughter and are giving her the care she needs right now. I find myself talking to myself (usually not out loud) alot lately - letting myself know that I'm doing all I can with these particular set of circumstances and assuring myself that somehow, I'll get thru. You will too! We're usually stronger than we think. Crying frequently doesn't mean you're not. It means you are a compassionate human being. I'm praying for you and your Mom...

Believe in GOD with GOD anything is possible. He can and will heal if you and you mom will fully believe and get prayers and spiritual help from others. It worked for my husband and I with my Mother-in-Law. She was dieing in mid January 2010. The doctors said her stomach and bowels would never work again. Well they are working again and GOD gets all the glory for that then satan attacked her again with a staph infection put her into ICUon on friday feb.5, 2010. She was non responsive and the doctor was very close to putting her on a ventilator. We went to visit her friday night the nurse told my sister-in-law and I she would not live 24 to 48 hours and would not come out of ICU alive. My sister-in-law and I said to her you don't know her she is strong and has a belief in God and healing. We will pray for her to be healed and she will come out of ICU alive and well. We talked to her that night and she tryed so hard to comunicate with us and she told us how much she hurt and she has the best tolerence for pain I have ever seen. She never complains. Well the next day she was alert watching TV and saing hi to he son and granddaughter. the next day (sunday) she was sitting up in a chair calling her son. On monday she was sent to a regular room an she also walked 150 feet that day, another miracle from GOD. The doctor said the staph was gone the day after they found it in her blood which was why she was non responsive and almost put on the venilator that he has no explaination for why it was there and now its gone. On thursday she was released. She is doing better everyday. Thanks to GOD and the miracle healing he gave her. So I say be strong and get good spiritual guidance to help you pray and your mom to pray for healing and pray for the doctors and nurses and anyone who has contact with your moms health care. I also am my mother-in-laws caregiver 24/7 and it is getting better but we have a strong belief in GOD and his healing. He may use doctors and nurses in his healing process so pray for them to help her and others they touch. My husband contacted alot of different preachers that believe in healing and had alot of people praying for her and the whole hospital. The doctors, nurses, patients, cooks, janitors, etc.(everyone). I will send prayers out for your mom to be healed. And for you. Remember Prayers can be very powerful. GOD will do things his own way. He wants to heal us.

What you are experiencing is normal I would worry if I did not feel that way.

Debbie, my sympathies to you as you go through this painful period. When we love our parents so much, it hurts all the more... I went through a similar experience as I watched mother dying of lung cancer and emphysema. Sometimes I couldn't hold back the tears---after all, we are human, and love our parents---and I noticed that Mom didn't seem to mind when I cried in front of her as she got closer to the end. I think it actually made her feel good and loved at that point. I hope this is the case with your mother, because it's not always possible to hold back your tears. I like what naheaton and liiliput told you....good advice for you. God bless.....

debbie: I go through this all the time. I try not to be on the verge of tears in my Mom's presence. So, I shift into practical "caregiver" mode and do what she needs at the moment.
No one on God's green Earth could have prepared me for this time in life.
So do give yourself time to vent and cry...it is normal. Sounds like the hospice folks are helping...so take a little break when you can.
I am convinced that the greatest gift you can give someone is to help them pass to the next life.
Peace to you and your mother,
Lilli

I'd say you were grieving the loss of your mother, even though she's still here. Cut yourself some slack and cry if you want to. No one expects a person who is watching someone they love die, to have a 'stiff upper lip', you're allowed. I'm sorry about your mom.