Preparing Children For/coping with Impending Death of Grandma/mom from Cancer

I also had a mom who refused hospice. One day she phoned me and my sister and told us it was time to go to hospice. (Her bedsores were too extreme for her to handle, and she didn't have home health care.) We took her to hospice. She became comatose (in and out) the next day, and died eleven days later. The kids handled it just fine. I remember it was quite a juggle getting everything done -- the kids were 2, 4 and 7. I mostly needed husband/friends/neighbors to watch kids while we visited her.

One thing that I would caution, and this is HUGE. If she has an advanced directive stating "no heroic measures" such so no water or nutrition, get her to agree to TEAR IT UP. Just like Terri Schiavo, my mother essentially starved to death before our eyes, and there was nothing we could do to stop it. It was outrageously gruesome to witness. She had cancer in the throat, and couldn't swallow, but she was alive and mildly responsive during the eleven days that she starved and died. The doctors kept telling us that she'd "die today", or "in a few hours", or "definitely by tomorrow". They were all wrong.

If they'd fed her intravenously -- even just water -- she would have been so much more comfortable, and would have died from the cancer instead of from starvation. But she'd signed that Advanced Directive, having no idea what it would do to her.

As for your Dad and siblings, since they're not willing to let you take charge re: decisions, just do your fair share and stop making suggestions. They've all heard your opinion and unfortunately they are not brave enough to face hospice either.

Be calm in front of the children and don't let them know that you're annoyed with the relatives -- that will only add to their tension.

T.- What a nighmare. My brother and I were at odds about hospice AFTER my mother's death. He thought that she gave up knowing we put her in hospice. I believe that she died more comfortably and with more dignity than any of us could have provided. I don't have any regrets about putting her in and I would do it again.

My son was just 18 months and it was impossible to take him to the nursing home because he wanted to run around and pull at every tube and do-hickey there was. I have great neighbors and they allowed me to go visit when time permitted. The nursing home was over 45 minutes away from me and 15 minutes for my brother and his family. We tried the best we could and I think that that is all any mother would ask for from her children.

It is a bumpy ride and no one is perfect. Just take it day by day and you'll get through it. God Bless.

What wonderful advice from everyone else! My MIL has terminal cancer, and it has been quite a roller coaster ride. My children are 7,5,and 3, and know Grandma is sick and will die, but they understand she will be pain-free in heaven and that comforts them. They take each moment with her specially, and love to have her read books to them, or just sit in the same room with toys. I have always made their teachers aware of the situation, so they can understand if my child is acting differently and the cause of their behavior. But I also try to focus more on the positive; when she is really ill, I tell them stories from when she was their age so they have something else to talk about, but still have it be about her.
It is her second bout of breast cancer that has spread to over 16 places in her bones. She has been given 3-5 years, and then again and then again. No one really knows.
Read Final Gifts by Maggie Callanan and Patricia Kelley. It has helped me so much. And it will help you understand your feelings and those of your siblings. Each of you will be in different stages of dealing with this, so it helps to understand what they are going through.
I do quite a bit for her when I can. Don't feel guilty when you can't. Some months I'm over there several times a week, some months, just a few times. When we have had a rough week dealing with that, I take a day off and do something fun for the kids. The downtime helps me relax, makes me feel like I am making my children important and does wonders for the kids. Sometimes we do a big thing, sometimes we go for a bike ride/hike, or to the library and read books for hours! It may not seem like you have a lot of "self" time, but playing a round or two of UNO with the kids before bed does wonders for my psyche! Also, spend Sundays cooking meals with the kids. Mine love to help out, we get together time and then I have meals I can take to my MIL and emergency meals for us. It makes it easier too when you have a big homework assignment to help with. Good luck!

Well this depends on if you have a praticing faith or on your own belief systems. First you are very open and honest with your kids. Kids are very receptive to this. They know things, and don't be too child- like with them. You need to tell them of death in a very dipolmatic fashion and let them know not to be afraid of it. it is apart of life and we will all experience it. Let them know of this cancer and what it is. But from the heart don't say things like, " God is going to take them from us" I told my 19 yr old son when my father died he took it very hard to my surprise. He was not close to him, but I told him we celebrate all things, and now this is a celebration of his eternal life. My father was 84 with Alzheimer's. I think he came to know that better with that.

Dear T.,
I'm so sorry. I have never been through this myself, I can only imagine what you're going through. I want to encourage you to just make sure that above all (besides God who is always 1st)put your family 1st. Maybe if possible take some time off work to calm down the kids and yourself and help everyone to adjust to the coming change. Good luck and God Bless.

Bless you... I just did this with my grandmother, I cared for her two days a week and then up to five days and finally she was moved to assisted living, which wasn't better in the fact that I was always going there, and my kids were exhausted. She lasted much longer than expected. The caregiver burnout is exhausting!
Hospice was a blessing, and we presented it to her without using the word Hospice initially, and just called it home care. She was ok with this, though on some level I am sure she knew. The care they provided was excellent.

I must say, the only way to survive this without complete burnout, is to give yourself permission to step out, and take a break. It feels like you shouldn't be doing it, but it is totally necessary. Let someone else take care of her for a day, or if possible, a few days, and don't think about it. Seems impossible, but it will make a difference. Also, you could go to Hospice, they may be able to support you if not your mother right now.

Remember, you will all get to the other side of this. Give yourself permission to not be good all the time, and your kids too. Also, it is ok to have fun and enjoy your family and be happy... your mother would want that. Spend some good time with your kids and hubby, even if you aren't 100%, it still may feel good.

I coped with massages, movies and treats too. Things to take your mind off are a blessing.

I send you my thoughts and support in this difficult time. You will get to the other side of this.

I am so sorry for all you are going through. Echoing other posts, it's important to remember that you can't take care of anyone else if you aren't taking care of you. Therapy is a wonderful way to remain centered and to cope with what's going on. For the kids, there is a WONDERFUL place called Judi's House (www.judishouse.org). It's a place for grieving children. They can help your kids out when they need the extra support.
God bless you and your family.

Sorry to hear of your situation. I do not know how you do it all, but you probably don't either. Once while I was doing a clinical rotation at a nursing home I heard one of the nurses say to someone "hospice is not giving up and some people do so much better that they are taken off hospice" That sounds like an incentive to me. I like some of the other suggestions about having someone come in for a little while just to help out and ease the transition. Good luck & God Bless!

T. D,
Oh, I definitely know how it is. I cared for my father and Mother both with no help to speak of from my brothers but my one sister-in-law was a godsend.

I learned that being very honest with my children about my parents illness's was the only way to go. They also helped in the care of my father.

Hospice did not care for my father, we did until the very end. But what a wonderful organization, they were involved from the first day with my mother's cancer diagnosis, they gave her 2 weeks and 2 weeks to the day she died.

The Hospice Organization talks with you, and is there immediately if something different happens. And they are there to hold you and comfort you at the end.

Your siblings and Mother are wrong not to get them involved in her care, they are wonderful and they help lift the burden.

Take care dear and I am praying for you and your family.

This one is very hard. F9irst off lets just say i am so sorry.
The hardest thing i ever went through was losing my father. we made it several years through his illness before it took him. trust in yourself and god you will make it through and they are right time heals all wounds. as for what to tell your children, well i know nothing of your religous background, what we did was have our preacher sit down with them and help them, we thought this along with our help was better for them. hope this helps, and remember you are not alone, you will be in my prayers.

I know how stressed you must be, having had several of my family members die and a couple of those with long illnesses. I was with my dad almost day and night for three months. I do look back and am happy that I spent as much time with my father and sister as they were dying from long illnesses. My mother and another sister died suddenly and I wish I had spent more time with them. Three-six months is not long in the scheme of things - I wish I had another three months with my mom, dad or sisters. Sit down with your family and explain that the next three months is going to be hell on them but you need them to be there for you and help out around the house. Your 12 and 10 year old should be able to help with lots and even you 5 year old will understand and should be able to help with some smaller things. In my house everyone does their own laundry 11 year old, 9 year old, and husband. I do mine and the household items. Your older kids could sit down with you once a week and help plan a menu that they can prepare for the times that you are with your mom. Let the housework go for a while, it will be there later. Also, explain to the teachers what is going on right now in your life - I imagine they will be very receptive and helpful.
If you just can't do it, then let your siblings know what you are able to do. Maybe you could pay their gas for the extra trips they have to take on your behalf, etc.
Good Luck - I wish you the best,
tam

My mom died of Colon cancer 4 years ago. Five days before my first was born. My nieces and nephews were 6, 8, 9 and 11. Their parents talked to them and also their was a guy to talk to them from Hospice. They were given special blankets and teddy bears to cope with the loss of Grandma. My mom was ready for Hospice and ready for her impending death. Just because you get help from Hospice does not mean you'll die tomorrow. Maybe just meeting them will help your mom better prepare herself. They also help after her death. I saw a grief counselor for over a year and it was the best thing I ever did. They also have counselling for siblings and children. You need to take time with your family and let your siblings take some of the burden. Hopefully, you had a good relationship with your mother so that you won't have regrets. If so don't worry about spending every waking moment worrying about her. I would think she would want you to be attentive to your family also. Good luck. Been there done that.

First of all let me say how terribly sorry I am for the pain your family is going through right now. I hope it is alright that I will be praying for you.
My first suggestion is about school starting and your kiddos. I would make sure that you have a discussion with all of their teachers so that they know what is going on in your family's life right now. Most teachers will empathise and try to help in any way they can. Not that you will let your children slack, just so the teachers can be understanding if something gets missed or forgotten in the emotional struggles and suffles of life.
My father had some major health issues in the past couple of years and there were times when I didn't think he would make it. My children knew he was very sick and in the hospital. They saw me cry. They also heard me praying nearly constantly. That is how we dealt with being worried/scared. We prayed...a lot. Hiding what is going on from your kids is no cure, they feel the tention and stress. They know something is going on. Be honest with them (age appropriately) and answer their questions to the best of your ability. My oldest daughter's teacher (last year, 2nd grade) was diagnosed with cancer in January and ended up having treatments the rest of the year and couldn't teach. Abbigail was so worried about her beloved teacher. She cried, and prayed, and cried some more. It's a terrible thing to have to deal with, but unfortunately it's something a lot of people do have to deal with, even children. We talked about her teacher and her faith, and that even if the treatments didn't work we had hope...we would see her again in Heaven. Thankfully she is in remission and we saw her yesterday (barely hair on her head) at enrollment and Abbigail got a big hug!
You know the benefits of hospice. My grandfather has been involved with hospice for years, and I don't think he's given up. This is one more advocate and person who now cares about him and helps him when he needs it (He has had parkinson's disease for at least 25 years).
I don't know if anything I've said will help, but I will be praying for you all. Prayers for peace, comfort, hope.
Blessings-A.

Dear T.,

Please let me start by first saying how sorry I am that your Mom is suffering, you're losing your Mom, and that your children are losing their Grandmother. I think it's wonderful that you're helping your Mom in any way that you can. I don't have any suggestions for how you can balance everyone right now, I just don't think you can help it at the moment. Your time left with your mom is so short. Just take one day at a time. You can't possibly do anything else. enjoy each moment you have left together. I understand why your mom refuses hospice. She want's to be in her own environment where she has the last hold on any control of the situation. Can you blame her? Cancer takes away any control you have. For your children, I can recommend a beautiful book (though you might need to order it from Amazon, etc..) Called : Lifetimes : - The beautiful way to explain death to
children" by Bryan Mellonie and Robert Ingpen. Your children could possibly be acting out because they feel your stress. It might help your children to look at photo's of your mother when she was healthy, so they can have another picture of her in their heads as well. I would also suggest letting their teachers know what's happening in your home so they can be prepared for any behavior and help in supporting them as well. Children are so sensitive. I wish you and your family all the best under the circumstances. Stay strong and again, I'm so sorry. T.

I am very sorry to hear of your situation and my heart goes out to you and your family. I have known people in similar situation and I agree with you on hospice. It is a wonderful program not only for the person in need but for their families. It is not only your mom who has to go through this it is all of you. If you are wrung out, stressed, tired and your children are suffering you will not have quality time with your mom in these last few presious months. You will be too busy just trying to figure out how to get everyone through the day.
My suggestion to you is to go and meet with someone at hospice. I am sure they have been through this situation many times. They might have some helpful advice. If you can take your siblings. They might be able to see the benifits of involving hospice as early as you can. After you meet with them I would schedule someone to come over one day when you can be there. Have them come in and help with a few things and maybe don't make a big deal of it. You could put a spin on it to your mom they are there to help make this time easier and better for all of you. Then you can all have more quality time together while you have it.
My best to you in this time.

My heart goes out to you - my sister and I lost our mom to cancer 5 years ago this last spring and we were given the option of hospice but did not take it, having my mom elect to stay at home. Hospice did come to the house the last two weeks but it was minor in comparison to what I gleem your mom needs.
As a secondary - when my grandmother was losing her battle with alzheimers my mom was the caregiver - 24/7 at a house they shared. When my mother could not physically take care of my grandma - (concerns of dropping her, lethargy, etc) my mom did take her to hospice and it was a Godsend. The hospice center she was in was so nuturing and safe and caring and full of wonderful supportive people for both grammy, my mom and me (I lived 20 minutes away and came to visit as often as I could). The burden lifted for my mom to know how well taken care of Grammy was at hospice was a gift at a terribly difficult time. I remember when the end came near and hospice called us - we came to be by my grandmother's side and it didn't matter it was 1 in the morning, the hospice people gave us our space and were so supportive to us. I am so relieved my mom took her pride out of the picture and took my grandmother there.
I am sorry for your situation and my prayers go to you and your family.

Let me just say that taking advantage of Hospice care is NOT giving up! I took care of my husbands grandmother who had dimentia, possibly Alzheimer's, and a slew of physical problems, for over a year. I don't know what we would have done without Hospice help. They were AWESOME. Hospice is for people who have been given 6 months or less left to live and they just do everything they can to make life comfortable for you (your mom). And if things go well with treatments and and she is obviously going to live more than the 6 months she won't qualify for Hospice help. That's what happened with my husband's grandmother, she got better physically and didn't qualify for hospice anymore. That's when I stressed out big time. When I wasn't getting that help any more. So Hospice really isn't a bad thing at all.

I am sorry you have to go through this. The older kids should be of an age where you can be open and honest about what is going on with grandma. Let them talk about their feelings, and be honest about yours...scared, sad, mad, confused... and how you deal with them. Give them healthy ideas about how to deal with them, instead of acting out. Do they have creative intrests (art, music, sports) that they can use to express them selves? They are also old enough to help with the "dinner shift" at home. They can help with dinner, and the little ones' baths. Give them the chance to step up and help. For the little ones, there are books about death that might help them to understand. Just keep it simple for them. "Mom is sad that grandma doesn't feel good". Get couseling for yourself and family (if they want to attend). Seek support in groups that deal with cancer. Yo can not force your siblings to see your side, b/c they will deal with this on their terms. Ask friends to help with the kids when you need to be with mom and dad. Start a dinner swap with friends so you only have to cook one day a week.

Just remember that your husband and kids need YOU healthy, so don't give so much that you have nothing for yourself. Take care of you first, then you will be able to take care of those you love. This is just a season in life. It will pass. I am sorry for your heartache. I wish you peace.

T.,
I am so sorry you are going through this. I helped care for my mother during her treatments for pancreatic cancer, which ended up being a terminal illness. My siblings were limited in how much they could help, so it is wonderful that you have siblings who help out and also home health care. Would you be comfortable doing research on local hospice providers (maybe you know some good ones already) and gathering information and then gathering your dad, mom and siblings together to discuss possibilities? Or even try organizing a non-committal meeting with a provider or two? Just to dispel some of the stigma and get some positive thought and discussion about it going on among your family. As for your kids, I would recommend just talking to them. Tell them your beliefs about death and about our bodies. My sisters' kids were 2 and 3 when my mom passed away and they had had a very close relationship with her. My sister explained to them that sometimes people get very sick, so sick that they can't get better and their bodies wear out. Then she explained our beliefs about what happens after people die. They were small, but they were prepared for it. It is very hard to watch someone you love grow weaker and weaker. You may want to look at your life and see what you can put on hold for a while. It may mean cutting down on church service for a little while or on other activities. It is important for your kids and husband to know that they are a priority in your life and time. Also, make sure you get a little time for you, even if it is just a couple minutes a day, as well as time for you and your husband to be alone (which is probably pretty limited already). Also, don't be afraid to accept service from others. You don't have to do everything alone. I know this is long but hopefully there is even one little idea that helps. Good luck.

T.,

I am so sorry to hear about your mom. :(

I don't have any advice about the decision-making process you're going through, but I have an idea for helping your kids cope.

When my grandma died, my 5 year old daughter had LOTS of questions and worries about death. On the advice of our school psychologist, I checked out about a dozen picture books that had the theme of death. Sounds morbid, but they were all children's fiction stories in which a family member or pet died. I found the books by looking in the on-line library catalog and entering "death and dying" as the subject matter. My daughter and I read and discussed all of the books... it made us both feel better and answered a lot of her questions.

Good luck to you and your family,

P.