I feel like I'm burning out... Small update post #43

[englishteacha]

My MIL and my father both passed away due to cancer, or complications thereof. My MIL lived just a mile down the road from us, and my DH put his college degree on hold to care for her. His mom lived with his sister (she had a small apartment attached to their house), so we did have some help, but DH was the primary caregiver. We did get help from hospice which was a godsend. A family friend also came to stay so that gave us a break once in a while.

My dad was home for the last 12 weeks of his illness. We had hospice support. My mother was with him 24/7, and she was a wreck...dropped 20 pounds, didn't sleep, lived on coffee. There are 8 kids in my family so we each took a couple days a week to help out. My mother's friends would come a couple days a week to take her out to lunch or just for a drive, to give her a bit of a break. Mom really was in need of a change of scenery once in a while.

I suggest contacting your local hospice and see what they can do to help you. If anything, they can give you a break for a few hours. Your mom's doctors should be able to point you in the right direction.

With my MIL's situation, the hospice did provide overnight respite care. A nurse/aide could come stay the night, or if MIL was really ill, she would stay a couple nights at a nursing home. We didn't use the respite option but it was nice to know it was available to us. That could be an option that will allow you and your DH to go stay the night at a nearby hotel.

 

[clovergirl5]

HUGE HUGS OP.....What a wonderful caring dd and son-in-law. I know its a hard thing to take care of loved ones who are sick. Just know that it is so appreciated by that person. She loves you so much and Im sure is so proud of the wonderful person you have become.
I hope this gets easier on you and many well wishes, hugs and pixiedust from my heart to yours. Stay strong

 

[Ember]

Thanks for the compassion. I needed a little right now.

We have a palliative care team right now that consists of a nurse and a doctor that both visit the home. They monitor her pain, her bowel movements, and nausea, and they are willing to talk.

The problem is that she wants to put on a brave front for them and only hints at the things that are really concerning her. When DH or I are here we open in talking to the doctor / nurse. They are patient and they really do try, but as soon as they leave she begins to panic about what they said. As an example, mum fell last week. Not hard, but enough to pull a muscle. We asked the doctor about it and he agreed that it was a pulled muscle. Mum asked if it wasn't that what else it could be. After hearing the worst case scenarios that's all mum could focus on. She was in an all out panic for days. The panic attacks are so hard to cope with because she's scared and I want to make it better, but there's just nothing to do. Then comes the massive guilt when I leave the house because she is in such distress.

The pain killers she's on also affect her short term memory. She she repeats herself when she there's something she's concerned about. She'll ask the same thing over and over to my DH and I. She doesn't mean to nag, I know she doesn't, but this is what it feels like.

Other than the short term memory issues she is fully alert and aware. She doesn't want a nurse or anyone else here with her, she wants me. There is no option of going into a hospice. She doesn't want to go and I couldn't cope with the stress or guilt of forcing her.

Someone said they felt like they were aged though care giving and that's a really good descriptor of how I feel. I'm 29 years old but I feel like I'm in my 40's. I will speak with the nurse next time she's hear to see if there's anyone else we could get into help, though.

Thanks again for listening.

 

[clovergirl5]

Are there any support groups info that your dmoms caregivers can give you for yourself and dh? Im sure it would be so helpful for you to talk to people that are dealing with the same type of things. My heart goes out to you

 

[wdwfan16]

Can you hire a part-time caregiver? The caregiver could do the juice, bathing and take her out during the day.

 

[ead79]

I have no experience with caring for someone in your mom's situation, but I just wanted to say how clear it is that you love your mom so very much. I can't imagine how hard this is on you emotionally.

Is there a way you could talk to the palliative care doctor and nurse when your mom isn't around? I think that they should be made aware of how severe her anxiety is. They probably don't see it since you said she puts on a brave face in front of them. But I'm thinking that they could prescribe her some anti-anxiety medications if you let them know just how severe her anxiety is. Maybe you could give them a couple of examples to let them know that it's a major issue for her.

Also, maybe there is an in-home hospice type of program that could come to help you out. I can understand her not wanting to go to one that isn't at her home, but maybe an in-home hospice situation would be OK with her.

and prayers in abundance for you, your mom, and your husband.

 

[minniecarousel]

wow....and here I was sorta feeling sorry for myself because I don't "sleep in" anymore. I have to get up during the night when my Mom needs to use the commode. I've organized her meds for years. I now help her dress, bathe, stand up. When I go back to work on Monday, we'll have an aide come in to help her in the mornings. (I work half time.)

The sponteneity has gone out of our (DH & I) lives. It's tough to go out to dinner, because that's when Mom needs to eat and then she goes to bed early. My sisters come on Saturdays, so we go out to lunch and run errands together.

Ember, I hope you can get some relief. Yes, start by talking to the nurse and doctor who come out to the house. It's tough to be "the one" that your Mom wants to do everything for her. But you can step back and let others (even strangers) help out.

 

[Tinkerbelle's Mom]

to you.

I was in your situation several years ago when my mom was diagnsosed with end stage lung cancer. She immediately moved in with us. She lasted 18 months after her initial diagnosis. Hospice came in for the last two months.

Hospice is a wonderful program. They are truly there to help you. I appreciated so much what they were able to do for me and my mom.

I support the program so much that I now work for a hospice company. I would reccomend looking into several different companies. Each Hospice has a different "feel" to it and you will want to make sure you are comfortable with the company that is helping you and your mom.

 

[bumbershoot]

There is no option of going into a hospice. She doesn't want to go and I couldn't cope with the stress or guilt of forcing her.

I wanted to quote a couple things, in case it wasn't obvious that the hospice care people were talking about didn't mean that she would have to go anywhere. Now in my grandma's case, once she broke her hip she went to a nursing home (and she had a reverse mortgage so after x months her house was not hers anymore), and then a few years later she stayed in the same place but got hospice care instead (nor more midnight ER trips, full review of medications she was getting...just a different sort of care). So there is a sort of hospice care you get when you are away somewhere, but that isn't what people are talking about here.

PPs suggestions for hospice care are spot on. They can provide care in the home...she dosn't have to "go" anywhere, and in addition to the home care, there are a multitude of support services that will be made vailable to the whole family....social work, counselling emotional support. Your mother doesn't want to "see" a counsellor but a good hospice nurse is able to "counsel" uinder the guise of her normal nursing duties. You will have access to nurses and nurses aides to assist you...not 24 hours a day, but at least for some periods of time to give you relief.

Most importantly, hospice offers you an unbiased set of eyes and a person who knows and can explain what is happening. You sound like you have been doing a wonderful job as nurse, daughter, caregiver...wouldn't it be great for you to be able to be just daughter once in a while, and savor the time you have with your mother and let someone else take over some of the other responsibility?

Hospice will be able to answer your mother's questions abot what's happening when she feels a pain, a twinge, some else "funny". The nurse will be able to anticipate what ther medications might be needed so that she isn't uncomfortable. Maybe she needs more or a different kind of anti-anxiety medication, maybe massage would help her relax more.....there are a myriad of services offered by hospice...

Wanted to quote this too as it was said better than I did.

I think the idea of having a few days a week at a Senior Daycare, Home Health aide or Home Hospice are all good suggestions for this situation. Contact your Mom's insurance to see what options are available for her. Your mom would not want your marriage or your health to be affected by her illness. I aged a lot this last year and the recovery from the both physical and emotional strain will take a while to recover from.

Good luck to you in this journey.

I think you should make sure you are having conversations with her care providers, making sure THEY know what she is telling you. They can't help if they don't know.

 

[Pea-n-Me]

I would suspect that the nurse and doctor are probably pretty aware of Mom's anxiety. The question becomes, what to do about it? Medication puts people at risk for falls and other things, and she's already declined counseling. That makes it a difficult situation to manage. I would encourage Ember to try to find ways to help Mom relax, like breathing exercises, music, warm baths, meditation, etc (whatever works for her). Again, it's not an easy thing to manage. Does Mom have any friends, family or neighbors, etc, that could help by being a calming influence for her? What about clergy members? Is there a cancer support center nearby who could perhaps offer something in the way of support? They often have volunteers who offer Reiki, Accupressure, Meditation and things like that.

 

[Bunchkin]

Just to say what's been said already, your mom doesn't have to be in a facility to receive Hospice care. My MIL was at home and was in Hospice care. When things did take a turn for the worse, she did enter their in-patient facility.

 

[Ember]

wow....and here I was sorta feeling sorry for myself because I don't "sleep in" anymore. I have to get up during the night when my Mom needs to use the commode. I've organized her meds for years. I now help her dress, bathe, stand up. When I go back to work on Monday, we'll have an aide come in to help her in the mornings. (I work half time.)

The sponteneity has gone out of our (DH & I) lives. It's tough to go out to dinner, because that's when Mom needs to eat and then she goes to bed early. My sisters come on Saturdays, so we go out to lunch and run errands together.

Ember, I hope you can get some relief. Yes, start by talking to the nurse and doctor who come out to the house. It's tough to be "the one" that your Mom wants to do everything for her. But you can step back and let others (even strangers) help out.

I just wanted to say that if there's one thing I've learned along the way, it's that comparing never works. There is always someone dealing with things that are far worse than you are, but that isn't the point. Just because someone, somewhere has a situation that is worse than yours doesn't mean your situation is negated.

I remember when my husband left to do his PhD across the country just weeks after our wedding. I can't tell you how many times I'd hear things like, "At least he's not fighting a war. You know he'll be coming home safe." And they were right, compared to someone who has to say goodbye to their loved one not knowing if they would ever see them again my situation was, by far, easier. But that didn't make the separation hurt any less. My tears weren't any less real nor did they count for less. I wasn't any less lonely for the knowledge that other people deal with situations worse than mine. Stress and suffering should never be a contest, because someone else will always "win."

I'm sorry you are also feeling stress and anxiety with your mum.

 

[Ember]

I spoke to my husband over lunch today and we think that next month (after we finish moving to our new place) we'll look into having a home care nurse in once or twice a week. We're also going to take all the advice and see what else is available to us. If we could get more people coming in, even just to socialize, it would be a big help.

One of my concerns with moving is how upset my mum seems about not having her bed in the living room anymore. As I said, we've all been crammed into a one bedroom apartment the past six months, so my DH and I have the bedroom and mum sleeps in the living room. This means even when she's sleeping we tend to be around. If we're in our room, she'll get up and come find us so it's easier to spend time in the living room. She likes having us close. But now she'll have her own room again and she has brought up over and over how lonely it will be.

I really need the move and we've already put in writing our intention to leave to the management. I need a home that has a purpose other than caring for someone else... Does that make sense? Half my stuff is still in my old place where I'm still paying rent and I feel like I've been living out of a box, even thought that's not really the case. We have an appointment tomorrow to see a condo we're hoping to rent so if it goes well, we may have a new home to ring in the new year!

I really want to thank everyone for the kind responses. I appreciate them.

 

[Ember]

Today was hard. Mum wants to go out and do things, but going out is a production. She needs help getting dressed, the wheel chair, help going to the bathroom... And it's expensive. She wants to go out shopping, or for dinner, or to movies. We went out last night for New Years to one my girl friends homes and she slept on the couch. When I took her to see Sherlock Holmes she slept though that. I feel like she just wants a new place to sleep - even though I know that's not the case.

When I mentioned I had to go into work, she says she wants to comes. When I say I'm going to go downstairs to the gym (I don't even go to my own gym anymore, I use the dinky one in the apartment so I'm gone less time) she wants to come. When I sit in my room to read, she comes and sits with me. I feel like I'm being smothered... And apart from feeling trapped and wholly responsible for the complete care and entertainment of someone else, I can't afford to keep going out all the time. I'm trying to pay off the debt from the trip I took her on to L.A. in August and another one in November to the mountains, both luxury trips.

When she mentions going out and I hesitate, she gets quiet and the guilt starts. When I leave she sits in her bed and goes from animatedly talking to pathetically whispering goodbye.

I had to run out today to get an alarm clock and I didn't want to come home. It's so oppressive here. I love her so much and yet I'm starting to hate this situation. I also know that at some point she won't be able to go out anymore and how am I going to feel then, knowing I didn't take her when she wanted to go? Why is this so hard?

 

[nskjerven]

It is hard because you love her so much.

No words of advice just another

What is your mom's name I'd like to keep her in my prayers if that's ok with you.

 

[diznygirl]

Today was hard. Mum wants to go out and do things, but going out is a production. She needs help getting dressed, the wheel chair, help going to the bathroom... And it's expensive. She wants to go out shopping, or for dinner, or to movies. We went out last night for New Years to one my girl friends homes and she slept on the couch. When I took her to see Sherlock Holmes she slept though that. I feel like she just wants a new place to sleep - even though I know that's not the case.

When I mentioned I had to go into work, she says she wants to comes. When I say I'm going to go downstairs to the gym (I don't even go to my own gym anymore, I use the dinky one in the apartment so I'm gone less time) she wants to come. When I sit in my room to read, she comes and sits with me. I feel like I'm being smothered... And apart from feeling trapped and wholly responsible for the complete care and entertainment of someone else, I can't afford to keep going out all the time. I'm trying to pay off the debt from the trip I took her on to L.A. in August and another one in November to the mountains, both luxury trips.

When she mentions going out and I hesitate, she gets quiet and the guilt starts. When I leave she sits in her bed and goes from animatedly talking to pathetically whispering goodbye.

I had to run out today to get an alarm clock and I didn't want to come home. It's so oppressive here. I love her so much and yet I'm starting to hate this situation. I also know that at some point she won't be able to go out anymore and how am I going to feel then, knowing I didn't take her when she wanted to go? Why is this so hard?

It must be so hard to be someone who is trapped in a bed waiting to die.
Just as hard I imagine on the person waiting for her to die.

Take some time to regroup, but please don't let this time with your mother slip by.

 

[LuvOrlando]

Oh Ember, I feel so badly for you and your Mom. From what you have been saying it sounds like your Mom is frightened to be alone, she may be afraid of dying alone. As for you, well you are going through a hard time too and are trying hard to tough it out... but you can't because you're only operating on 1/2 energy due to all the changes swirling around.

My 2 cents is you really need to give yourself permission to be human. Try explaining to your Mom that things are only going to get harder and more confusing and that if you have a familiar nurse in there to help and ask questions things could only improve for everyone all around. More important, when the nurse is there you could pop out to run an errand or 2.

Whatever you do, or don't do, plenty of people will be here to support you

 

[Keli]

I don't have any advice at all, I've never been in your situation. But after reading this thread and seeing everything you are going through I just wanted to tell you that my heart goes out to you and that I really hope you are able to get some help with your mom and a little time for yourself and your dh.

 

[Ember]

A bit of good news today, we have a new place to live! We're moving out of the little one bedroom into a much more spacious two bedroom place. Mum will have her own room and DH and I will get a little breathing space. We won't feel like we're living in each others pockets.

We're moving on the 23rd and 24th of January. This will also be something to focus on and talk about. Plus we'll be much closer to family, so maybe we can encourage some visiting.

 

[minkydog]

I think the move to a larger apartment will be good for you. Just to have a little space to spread out in will feel like heaven. It can't be easy living with someone who wants your constant presence and attention. And I don't blame your mother--she's scared. She still wants to enjoy life, get out and not be dependent, but her body is failing.

When we went through this end-of-life stuff wiht my dad he went from being very arrogant and independent to extremely clingy. He admitted he was scared to death--scared that he would die in intractable pain and scared that no one would be there with him. I had a frank, but gentle, conversation with him and I assured him that I would stay with him through the end and that I would manage his pain to the best of my ability. He asked me several times over the last 30 days of his life, "please don't go" "Please stay with me" "I'm so afraid." I imagine your mother is going through some of this. It can't be easy for you.

You can't give in to those feelings of guilt. For one thing, it's false guilt. You haven't done anything to increase her pain or worsen her health. You are doing everything you can. It's okay to feel sad, but it's not okay to allow yourself to acknowlege guilty feelings. You have to let that stuff go or it will eat you alive. I'm glad you're getting someone to come in for you. Your mother may rebel but she's just going to have to accept it--you NEED a break, not just whenever you can get it. You need a break with regularity or you're going to succumb to depression and health problems. And when it comes time for hospice, let them come in. Hospice was a wonderful thing for us, even though my dad was in the hospital by then. Just having nurses in my court and helping ME through the experience was worth it's weight in gold.