Care Givers for Terminally Ill Family Members

[AphroditeReborn]

I don't know if this is really where to post this thread, but I've seen a lot of different subjects on the AH so thought I'd see what happens ...

I am the primary care giver for my mother-in-law who was diagnosed with lung cancer a year and a half ago. She went through chemotherapy and radiation and in January the doctors confirmed there was nothing else they could do. She has been placed on the hospice program and now we have nurses and social workers coming to the house nearly every day.

I guess I'm looking for a place to vent some of my stress, but also wondering how anyone else might have handled this situation.

Doctors won't give a time frame for her now. They say she is in the "months" zone now and sometime her body will just start to shut down and then it will be "weeks" and then "days" followed by "hours"

This is my first experience with a dying person and I'm not really sure how to handle it except day by day and doing whatever she wants

Any thoughts on this are greatly appreciated..... Thank you!

 

[impressive]

Is in-home hospice an option? They were absolutely fabulous with my aunt.

I have some familiarity with your situation, although the person for whom I care is disabled rather than terminally ill. He isn't medically fragile, but he still requires total care. It's hard -- even when you have good support services.

 

[_Lynn_]

We used the in-home hospice care for my father for several months before moving him to their facility for the last eight weeks. We had a private apartment, with our own kitchen, laundry, and shower. Family came and went, spending nights with him. The difference was the hospice staff was right in the same small apartment building. It was an excellent way for us to rely on them 24/7.

When my mom was sick, she stayed with me and my family. I know how difficult is it to juggle a full-time job, kids, a spouse and the care they need. To give myself breaks, I searched her friends, church, co-workers, etc, asking if anyone had a few hours a week to visit with her. That was hard, but people responded very well. Breaks are important.

 

[AphroditeReborn]

Is in-home hospice an option? They were absolutely fabulous with my aunt.

I have some familiarity with your situation, although the person for whom I care is disabled rather than terminally ill. He isn't medically fragile, but he still requires total care. It's hard -- even when you have good support services.

Thanks imp! The hospice program here says that they are mainly "helpers" and that they rely on the family mostly to take care of the dying family member - so I do see them every other day, if not every day, but it's only for an hour or so

 

[AphroditeReborn]

We used the in-home hospice care for my father for several months before moving him to their facility for the last eight weeks. We had a private apartment, with our own kitchen, laundry, and shower. Family came and went, spending nights with him. The difference was the hospice staff was right in the same small apartment building. It was an excellent way for us to rely on them 24/7.

When my mom was sick, she stayed with me and my family. I know how difficult is it to juggle a full-time job, kids, a spouse and the care they need. To give myself breaks, I searched her friends, church, co-workers, etc, asking if anyone had a few hours a week to visit with her. That was hard, but people responded very well. Breaks are important.

Thanks Lynn for responding. They have mentioned that she could die at the hospital or a nursing home if we desire, but her son wants her here. I am getting help from some of the family, but since I am not working right now, it's easier for me to be the primary. I just hope that when the "months" she has left turn into "weeks" that her children will come by more often

 

[_Lynn_]

Thanks Lynn for responding. They have mentioned that she could die at the hospital or a nursing home if we desire, but her son wants her here. I am getting help from some of the family, but since I am not working right now, it's easier for me to be the primary. I just hope that when the "months" she has left turn into "weeks" that her children will come by more often

My siblings didn't help with our mom, that's why I reached out to others.

 

[AphroditeReborn]

My siblings didn't help with our mom, that's why I reached out to others.

I am not sure who I could reach out to... she doesn't go to church and has only lived in this area for two years so really doesn't know anyone

 

[_Lynn_]

I am not sure who I could reach out to... she doesn't go to church and has only lived in this area for two years so really doesn't know anyone

There are churches with groups that help though. Call a local pastor and ask. He may have answers or a number to try for someone else. You could try the 2-1-1 helpline. I'm not sure if it can provide such information or not, but again, they may have resources.

 

[AphroditeReborn]

There are churches with groups that help though. Call a local pastor and ask. He may have answers or a number to try for someone else. You could try the 2-1-1 helpline. I'm not sure if it can provide such information or not, but again, they may have resources.

Thanks! I will definitely look into that!

Things are not too bad now... she can still walk {with a walker and is on oxygen} but there will be a time in the not so distant future that I will need help I'm sure

 

[_Lynn_]

Thanks! I will definitely look into that!

Things are not too bad now... she can still walk {with a walker and is on oxygen} but there will be a time in the not so distant future that I will need help I'm sure

Better to prepare now than to wait until things are worse.

 

[Nirvanadragones]

Firstly, she's very fortunate to have you. Remember that, even if it gets hard to remember.

I hear you about what the doctors say about time, but within that sphere of time, it is not as linear. She will have fabulous days and moments and hours, and then she will have those times when she's just not there, but it's not all a downhill spiral. Don't see it as "She's not so bad now, and it's only downhill from here" as that might make you miss out on the times when she's really ok. I think it's very important to understand that her body is failing her. It's only her body. The rest of her is who she was before, except . . . the meds she might be on, as well as the stress and turmoil of dealing with the disease, will mess with her mind and emotions, but first and foremost, she is physically not well.

Depending obviously on how sick she is and how physically able, no matter how much you might want to do for her, if there is stuff she can do for herself, even part way, then let her. In fact, encourage her without being patronising. If there is something she is particularly good at, try and find a use for her skills. even if she can't "do" - physically, she can talk, and listen, give advice, etc. I think two of the worst parts of being this sick is firstly, that you can't do much for yourself and you're reliant on others for things you used to take for granted you could do for yourself. And secondly, feeling useless, and of having no purpose. The purpose you used to have in the world becomes so much less important to you initially. And people stop relying on you for anything. And by the time you're ready to give back, you can't.

Also depending on how close you are to her, I think one of the best gifts to give a terminally ill person, is your understanding. Even if you won't really know what she's going through, let her talk, let her vent and cry and laugh, and do all of those things she needs to. Encourage her to live. Yet, at the same time, she might need moments of stillness, quietness, and peace.

I'm not sure if this will help you. I wish you and her love and light

 

[AphroditeReborn]

Firstly, she's very fortunate to have you. Remember that, even if it gets hard to remember.

I hear you about what the doctors say about time, but within that sphere of time, it is not as linear. She will have fabulous days and moments and hours, and then she will have those times when she's just not there, but it's not all a downhill spiral. Don't see it as "She's not so bad now, and it's only downhill from here" as that might make you miss out on the times when she's really ok. I think it's very important to understand that her body is failing her. It's only her body. The rest of her is who she was before, except . . . the meds she might be on, as well as the stress and turmoil of dealing with the disease, will mess with her mind and emotions, but first and foremost, she is physically not well.

Depending obviously on how sick she is and how physically able, no matter how much you might want to do for her, if there is stuff she can do for herself, even part way, then let her. In fact, encourage her without being patronising. If there is something she is particularly good at, try and find a use for her skills. even if she can't "do" - physically, she can talk, and listen, give advice, etc. I think two of the worst parts of being this sick is firstly, that you can't do much for yourself and you're reliant on others for things you used to take for granted you could do for yourself. And secondly, feeling useless, and of having no purpose. The purpose you used to have in the world becomes so much less important to you initially. And people stop relying on you for anything. And by the time you're ready to give back, you can't.

Also depending on how close you are to her, I think one of the best gifts to give a terminally ill person, is your understanding. Even if you won't really know what she's going through, let her talk, let her vent and cry and laugh, and do all of those things she needs to. Encourage her to live. Yet, at the same time, she might need moments of stillness, quietness, and peace.

I'm not sure if this will help you. I wish you and her love and light

{{{HUGZ}}} thank you I needed the reassurance that I am doing this for the right reasons... and yes she does have "good" days and she loves to get out into her garden... she was like a kid at Christmas when a package came in the mail with those Topsy Turvy tomato plant hangers

She is worried that she will become a burden to the family, but we don't {at least I don't} think of her that way... there is no where else I'd rather be right now.

I am closer to her now than I ever was before and I think it's because we've finally reached an understanding about each other. When I was married to her son we were at odds a lot because he was such a "Momma's boy" but now I think that relationship between them is very special. He and I have been divorced now for almost nine years and yet he and I are still good friends and now his mom and I are becoming closer... the rest of the family I have issues with, which is why I fear they won't be willing to help out when it's needed... as an example... there is a family reunion she wants to go to later this month with her biological family {she was adopted} and none of her kids want to take her to this reunion because they can't stand that side of the family... How sad is it that her EX daughter in law is willing to drive her down there because I know it's important to HER. I don't even know any of those people and yet I am willing to drive her down and spend time with her and people I don't even know because I know it is important to her. My ex {her son} would go but works out of town for two weeks at a time... her other kids {three sons and one daughter} don't give a damn

 

[john-the-author]

My wife's last husband died of lung cancer after years of smoking. His diagnosis came way too late in the game to do much: it was Stage 4 when they found it in July 1998 and he died in November.

Perhaps the biggest thing that stands out about what's she said about this are that you usually know when someone's getting ready (and I've seen this several times with friends who've been dying). They start talking about taking a trip--one friend dying of a brain tumor about 5 years ago was talking about 'our impending cruise' with a bunch of friends, which cruise was leaving from Tucson where he and most of the friends were--or seeing a door that's not there--like the sister of an old friend did. You'll know.

The other thing that comes to mind is that she was with her husband when he died and she felt a sense of relief all the way around: for him, for her, for the family. This huge hard piece of work was over.

Great good luck with everything.

 

[Tricialen]

I feel for you, I really do. I nursed both my mother and mother-in-law. My mother had heart failure and my mother-in-law had cancer. It's not an easy thing to do. But it is the best thing you can ever do.

But you must find a way to take care of yourself too. There are volunteers that will come and sit with her and maybe you can have just a bubble bath or a nap. Other family members could help so that you and your husband could have a night out. You need those things because what you're dealing with is soul wretching. You will need every bit of strenght that you have to get through it.

My mom died in my arms...it was where she wanted to be, but it was hard, very hard for me.

My mother-in-law hated me but she wanted me to take care of her so I took a leave from work and did it. We, my husband and I brought a little bit of sunshine and laughter to her and I know it made her days easier.

You have my prayers and this is a good place to vent when you need to....you're with friends.

 

[sweetness6280]

Tricia and the others are right. This will be simultaneously one of the most difficult and one of the most rewarding things you will ever do. Keep posting here. Use this forum to vent all of your frustrations, and those thoughts you think you cannot share with anyone. Share them here.

Taking care of yourself is imperative. We all enter into this thinking we can do it, but soon realize that the experience is truly exhausting physically, mentally, emotionally, and spiritually. There will be times of utter frustration, and times of pure joy. You will experience a roller coaster ride of emotions, but allow yourself the freedom to feel every one.

Find a caregiver's support group in your area. There is a wealth of experience, knowledge, and resources to be had there. Hospice is wonderful, but if your situation allows, hire a home health nurse part-time. If someone says "let me know what I can do to help," let them know!

Most of all, enjoy those good days. You will cherish those memories forever.

 

[AphroditeReborn]

Thank you all for your kind words and support {{{HUGZ}}} I will continue to post here if for nothing more than to "vent" or make this a journal of sorts

 

[lesbiaphrodite]

I went through a really rough year with my Dad after his stroke, spending months with him sleeping in the chair at his bedside in hospital and then going to be with him every weekend while he was undergoing physical therapy.

It was really hard to see him go through so much suffering and so many near-death situations that year. However, I have to say that I wouldn't trade that time for anything in this world. It made me understand so much more about the dimensions of love and how they can expand to take in more than you know you can. We both came out of it okay, and I think he really does know that I love him more than he ever did before that.

I know the situation is slightly different for you, but I understand totally what it is like to wait for death to come for days on end and was told it would on more than one occasion. So, I do know the pain and sadness of that waiting. But, you will give her an immeasurable gift by sharing yourself with her and being there for her in those final hours.

God bless you, your family and most of all, your mother-in-law.

 

[AphroditeReborn]

Thank you Lesbi for sharing your thoughts and experiences...

Just to update ... because I don't like misleading people at all...

She is my ex-mom-in-law... her son and I have been divorced almost nine years. But obviously we are all still close My ex hubby and I are still good friends and I think he's glad I am here when he can't be because he is over the road so much.

 

[AphroditeReborn]

"blog" posting

Yesterday was a good day... her pain stayed around a two but this morning she woke up at 5:30 with a pain level of 8 now at nearly 10:15 it's still not down from that level

I just wish I could make her comfortable... sometimes I feel so helpless

 

[Bazzz]

I think you had some great advice from some people that have the experience to know. I think that the one thing that you do have to remember is that this is a natural process (we all go through this at one point or another) and there have been so many that have been just as selfless as you are being now. You are to be commended, as this woman is not your own mother, sister, etc and many people would have walked away from this task as she is technically not immediate family.

I hope you are meeting with people that are good at getting you through this. You can't do this all alone, at least mentally. There are groups out there for caregivers and you should find one in your area. These people will have the experience and knowledge to help you. Meeting with a group like this will help you realize that going through this is sometimes not just a sad and horrible thing.

 

[AphroditeReborn]

I think you had some great advice from some people that have the experience to know. I think that the one thing that you do have to remember is that this is a natural process (we all go through this at one point or another) and there have been so many that have been just as selfless as you are being now. You are to be commended, as this woman is not your own mother, sister, etc and many people would have walked away from this task as she is technically not immediate family.

I hope you are meeting with people that are good at getting you through this. You can't do this all alone, at least mentally. There are groups out there for caregivers and you should find one in your area. These people will have the experience and knowledge to help you. Meeting with a group like this will help you realize that going through this is sometimes not just a sad and horrible thing.

Thanks for posting Bazzz {{{HUGZ}}} I know it's not just a sad and horrible thing and I have become even more and more attached to her every day

I am trying to maintain some semblance of a normal life, but in reality she is my life right now and I wouldn't have it any other way

 

[trysail]

There are no two ways about it— not fun stuff. She's lucky to have you. You've received good advice here; be sure to take time for yourself. Does she have the ability to self-administer pain-killing medication? If not, it's something you might want to look into it.

 

[AphroditeReborn]

There are no two ways about it— not fun stuff. She's lucky to have you. You've received good advice here; be sure to take time for yourself. Does she have the ability to self-administer pain-killing medication? If not, it's something you might want to look into it.

Thanks trysail - yes she can swallow the pain pills but I keep track of when she takes them... if her pain level is a 2-4 I give her one 5mg and if it's higher she takes 2 - she does take the long acting ones in the morning and night but she is afraid of becoming addicted to pain killers... it's hard to tell her {though she has accepted it} that she won't be getting better to worry about withdrawals so sometimes she lets her pain level get higher than it should - I only want her to be as comfortable as possible

 

[freshface]

Thanks trysail - yes she can swallow the pain pills but I keep track of when she takes them... if her pain level is a 2-4 I give her one 5mg and if it's higher she takes 2 - she does take the long acting ones in the morning and night but she is afraid of becoming addicted to pain killers... it's hard to tell her {though she has accepted it} that she won't be getting better to worry about withdrawals so sometimes she lets her pain level get higher than it should - I only want her to be as comfortable as possible

Make sure the hospice people are talking with her about pain control. Pain studies in cancer patients have shown that some of them can function normally even while taking doses of morphine that would kill you or me. The right dose for them is the one that controls their pain.

 

[AphroditeReborn]

Make sure the hospice people are talking with her about pain control. Pain studies in cancer patients have shown that some of them can function normally even while taking doses of morphine that would kill you or me. The right dose for them is the one that controls their pain.

Thanks for your comments freshface I know it's important to control her pain and so about every 2 hours I ask her what the pain level is... we are keeping track so that the doctors and nurses can regulate the long acting meds so that she doesn't have to take so many during the day

Some days are good... the past few days and even today she felt good enough to drive herself to a hair appointment