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

[Ember]

Just over six months ago my mother was diagnosed with terminal cancer. I uprooted that day and moved in with her. My husband cut short his PhD across the country and moved in as well. She was given three months...

I'm so very grateful that she's still here. She's my best friend and I love her more than anything. But the constant stress is starting to build for me. We are finally moving out of her one bedroom apartment (she had a lease and couldn't move until now, so we've been three people in a small one bedroom apartment). I think this itself will help ease the stress, as being crammed in has been difficult.

But it's more than that. As an only child, I'm the only support she has. She is dependent on me (and my husband) for everything. Because she is home alone while we work, when we get home she wants to be taken out. I understand that she's bored, but this gets hard as she needs be taken out in a wheelchair. There's no down time. I help her bathe and dress, make her juice (which has her laxative and protein supplement), organize her daily drugs, and take care of all the finances. DH is great and does most of the cooking and laundry.

She is also very needy emotionally, which is another area DH is great. She gets anxiety attacks regularly and is constantly worrying that things are getting worse. She doesn't want to speak to a councilor, she spoke to one once, but doesn't wish to see another one. But it's a daily thing for her and I can't seem to ease her in any way. She had anxiety medication, which she does take, but her panic feels constant. She keeps wanting to know what every ache and feeling means, and I have no answers...

I don't mean to complain, I really don't. I am so grateful to be with her and I wouldn't trade this time for anything. But I'm feeling very weary. I know my marriage is strong, and that we're okay, but I also miss being with my husband. And I feel guilty for that. But after two years away, he's been home six months now and I have yet to have a night alone with him. I miss my friends who I see much less often. I can't make plans for things because it depends on whether it's a good day or a bad day for my mum.

I know this will only get harder, and I'm not sure where to turn for help. I'm feeling very guilty and trapped and scared...

If you made it this far, thanks for listening.

 

[tinkerbell of winter]

Taking care of a relative with terminal cancer is definitely a difficult thing to do, have you considered contacting an organization such as Hospice? In my area they have a great hospice organization which has made a tremendous difference for many people. They may be able to help your mom both mentally and physically, allowing some of the burden to be lightened from you and your husband. You want your relationship to remain healthy as well and caregiving creates a huge strain, it is ok to ask for help. They may also be able to help your mom cope with her anxiety as they have been down this road many times and may know some techniques or treatments which may be effective for her. You absolutely SHOULD NOT feel guilty, you are doing amazing! Many hospices also can offer respite care, which is full time caregiving on a temporary basis to allow family caregivers some time to themselves. You are doing a great thing and you will treasure this time in the years to come, trust me on that, my dad passed away suddenly on Christmas eve and there are a thousand things I wish I could have said to him..... Look into it, it is for your mom's health as well as your own

 

[Bunchkin]

I can understand what you are going through.
This past June we moved across the country to help my MIL who was dying from terminal cancer. As soon as I arrived, I was taking care of her every day. Plus, trying to get settled in a new home and help our two children adjust to their new surroundings too. My MIL's health took a severe turn for the worse just weeks after we arrived. It was becoming harder and harder to stay strong and take care of her and my family. We sought help from Hospice. And it was a savior in many ways. Not long after seeking their help, she passed away.

My suggestion to you would be to find Hospice care near you and see what type of service they can provide. Besides nurses and aides, they can also refer clergy and other volunteers that can come to visit your mom every week.

 

[bumbershoot]

These feelings are *very* common. Do not feel bad about them for an instant, OK?

My aunt cared for my grandmother for years, and refused to get help for herself for quite a long time. She drove herself to the brink, and finally gave in. Finally got some respite care, and while it's probably not what you can do, she found a "daycare" for seniors that she could take my grandma to every few days. It allowed my aunt a little bit of room to breathe, go to the store without worrying, etc.

So definitely look into *something*. There are agencies you can contact with all sorts of helpful info for people like you and your husband who are caring for someone else, and help for your mom as well. So start looking for help, and please oh please, do not feel bad about it at all. It is so so so so so common for burnout to happen, and it doesn't mean anything negative about your utter love for her. It just shows that you're human.

 

[nuttylawprofessor]

Ember,

Welcome to the cancer club. Nobody wants to be a member, but we are always there for one another. My mom was diagnosed with stage 4 lung cancer in July. She moved out by me to be with family and get better health care. I really do know how you're feeling right now. Some things will get better, some will get worse.

Caring for your mom is tremendously hard. She knows that, and she will want you to recharge your batteries.

If your mom is undergoing any form of treatment (chemo, radiation, etc.), she may not be approved for hospice care. Hospice care is reserved solely for comfort. Insurance companies won't cover both treatment and comfort care simultaneously. If, on the other hand, she is only receiving comfort care from her docs, I would ask for a referral for a hospice agency.

Another option is to get a referral for a palliative care agency. You can get palliative care (often given by hospice agencies) and still continue treatment. Palliative care will provide you with nurses, social workers, and other health aides to help you care for your mom and control her symptoms. You will still be the primary caretaker, but they are a great resource and can suggest pain/symptom management techniques that the oncologists aren't thinking of.

We worked with a hospice agency when my grandfather was at his end 18 months ago. We are working with an agency here for my mom. They have been wonderful, and they are available by phone 24/7.

Sometimes it helps to talk to people who are going through the same thing as you. If you ever want to chat or email, please feel free to send me a PM.

 

[BuzznBelle'smom]

Another vote for Hospice. I can't say enough good things about them. When my dad was dying of cancer, they helped my mother and sister so much--they were the primary caregivers. They provided respite care so my mom could have a few hours to herself. They helped my mom see when medical equipment was needed, like a hospital bed, and helped her get a morphine pump towards the end. They do also offer counseling, but if you rmom refuses, that's okay, too--the people who work there are well-trained and very dedicated to easing the path for this last journey.

And don't feel guilty for having feelings of exhaustion or wanting time with your spouse. You've taken on a really huge job here--one that none of us ever want. The hours are long and the pay is lousy. Think of it this way--if you could get respite care once a week, so you and DH could enjoy a few hours as a couple, it would make you that much stronger and emotionally available to your mom.

 

[Sgt Mickey]

I also vote for a hospice volunteer/nurse. Someone that can come and visit with ehr and keep her company while you and your dh are at work,

 

[Disney Doll]

You are suffering from what we in the nursing profesison call Caregiver Role Strain.

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...

 

[mickeyboat]

Ember,

Welcome to the cancer club. Nobody wants to be a member, but we are always there for one another. My mom was diagnosed with stage 4 lung cancer in July. She moved out by me to be with family and get better health care. I really do know how you're feeling right now. Some things will get better, some will get worse.

Caring for your mom is tremendously hard. She knows that, and she will want you to recharge your batteries.

If your mom is undergoing any form of treatment (chemo, radiation, etc.), she may not be approved for hospice care. Hospice care is reserved solely for comfort. Insurance companies won't cover both treatment and comfort care simultaneously. If, on the other hand, she is only receiving comfort care from her docs, I would ask for a referral for a hospice agency.

Another option is to get a referral for a palliative care agency. You can get palliative care (often given by hospice agencies) and still continue treatment. Palliative care will provide you with nurses, social workers, and other health aides to help you care for your mom and control her symptoms. You will still be the primary caretaker, but they are a great resource and can suggest pain/symptom management techniques that the oncologists aren't thinking of.

We worked with a hospice agency when my grandfather was at his end 18 months ago. We are working with an agency here for my mom. They have been wonderful, and they are available by phone 24/7.

Sometimes it helps to talk to people who are going through the same thing as you. If you ever want to chat or email, please feel free to send me a PM.

This post is worth repeating. We are going through something similar with my FIL and have run into the treatment / hospice issue. He is receiving chemo as a palliative measure, though, so we are wondering if hospice is still an option.

When we first met with the oncologist, we met with a social worker from the palliative care team. They are affiliated with the hospital where FIL is receiving treatment. They are there to not only support the patient, but also the family. See if something like that is available in your area.

I am sorry you are going through this, and hope you find some help / peace.

 

[airhead]

I feel for you,I really do. Taking care of someone like you are is so hard on many levels.
Its good that you can come here to these boards and "dump" some of this stuff. Life is hard sometimes. When bad things are happening,everything else in our lives seems to stop.
Nothing is right. I think that's where you are right now. It'll pass.It may not end like you wish,but it will pass. Life never stays the same. Its our reality. So,you keep coming here,and complain and cry all you need to. We understand.

 

[MIGrandma]

Everyone needs some time to themselves, I agree with others here who have said to look into hospice care.

Here we have a Commission on Aging office, and they offer a multitude of senior programs and advice, maybe you could check and see if you have that in your area as well.

Would your mother agree to relocate to an assisted living facility?

I, too, am an only child and will be responsible for my mother's care but she has already told me she does not want to move in with myself and DH. She had her own father live with her for 4 months and she said it was such a strain and draining on her, she does not wish that upon us. She is a very social butterfly, so she would really enjoy living in an assisted living facility or a nursing home if it ever comes to that.

I hope you can find some help, you deserve it. Senior day care a few times a week, hospice, a visiting nurse, etc. There are lots of options, you just need to find the one that is right for you and your mother.

 

[Hillbeans]

As a previous poster mentioned, welcome to the club that no one wants to be a member of. My DH and I had my MIL come live with us earlier this year when she was battling Stage 4 Breast Cancer and was struggling. While the amount of "care" she needed varied, she did have a few good months over the summer where she was really self-sufficient. The last 3 months were very hard as she needed almost round-the-clock care and was hospitalized/hospiced. She passed away on Christmas day.

I won't lie because DH and my marriage was strained from the pressure of being a caregiver to MIL. While in many ways it was really great for us and our kids to have her here with us, having another adult in the house causes the primary family relationship to take on a different role.

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.

 

[LuvOrlando]

I am so sorry you and your DH have to go through this. Even though I was never in your position I think Hospice is the way to go. A DF of mine lost her Mom this past year and hospice was very helpful. Like DisneyDoll said, they can answer questions. I know they were able to point out when the end was near to the caregivers and the signs when she was drifting away which was a huge help. For my friend the hardest part was being able to figure out what signs meant she needed help and which ones just meant the end was near. DF was always consumed by the fear/guilt she wasn't doing enough and hospice helped reduce that stress for her so in that sense alone I think it was worth it. Again, I am so sorry for you

 

[Kitty 34]

Some very good advice already offered so I just want to give you a big .

I tended to my mom only for 6 weeks this past summer when she struggled with a horrendous case of shingles. I cooked for her, helped her bathe and dress, etc. I can't imagine what you're going through especially since you are dealing with a terminal illness.

My thoughts and prayers go out to you and your family.

 

[Pea-n-Me]

I agree with the above posters about Hospice. Nursing someone chronically or terminally ill is very difficult. Thank God you have your DH there for you (he sounds like mine ). You have to make sure you take care of yourself in this, however that may be. Someday when you look back you will be able to know in your heart you did the right thing for your Mom, as difficult as it was. She is very fortunate to have you. Hang in there.

 

[NY Disney fan]

I have no real advice, just wanted to say that hospice care is a win-win situation. Your mom would be around people all day and feel somewhat social while you get a somewhat normal life back. Protecting your marriage is a huge priority too. You have a lot to balance. Also, if you don't take care of yourself, you cannot properly take care of your mom, and she needs you more than ever right now.

 

[amyy]

I am so sorry you are going through this.

I was in somewhat the same position with my mom a year ago. I really feel for you. Please take care of yourself. Even though your mom won't go see a counselor have you thought of seeing one? It was almost a year ago that I wound up in the ER for anxiety meds because I was at the end of my rope. Some people probably think it is silly/waste a money but I treated myself to a monthly massage and it felt good to do something for myself. Plus I carry all my stress physically and hurt constantly.

Can you cut back your hours at work or take family medical leave? That was the route I was looking at. It was as much for my me as for my mom-so I would still have time to take a walk or read a book etc. It didn't come to this for us.

As everyone has said Hospice is a great option. I don't know what part of the country you are in but hopefully there are other options too. Maybe someone from a local church that would come and sit with her for a few hours so you and your husband can get some time together. The people from my mother's church have been wonderful.

Take care and I will keep you all in my thoughts and prayers.

 

[charming23]

First off to you. Taking care of ill family members is a hard job and my hat goes off to you.

Second I agree with the PPs who have suggested Hospice Care. We had them come in when my Great Aunt was diaganosed with cancer to help take some of the responsibility off of my Grandmother, who could not physically handle it anymore. They were wonderful and always involved us in everything they were doing. They kept her comfortable and kept her "active" through playing games and helping her walk around. They were also a comfort to us when she did finally pass away.

I feel for you in being the only child. I too am an only child and when my Dad got sick a few years ago I felt as if the weight of the world had been placed on my shoulder and I grew up super fast. I felt as if I needed to be the one who took care of him and refused any extra help. I tried to do it all I helped take care of my mom, I got my first full-time job, was in college full-time, and took care of him full-time. Finally after a Dr's appointment where my blood pressure was sky high that I finally admitted I needed help. My Aunts and Uncles stepped in and I took a leave of absence from school. Spending time with my Dad was more enjoyable because I could focus on him and our time together not worrying about every little thing.

So hang in there and don't forget to breath every once in awhile and take sometime for yourself.

 

[JerseyJanice]

You've gotten lots of good advice here. I want to add that I think you're a fantastic daughter, and your husband is a saint. God bless you both for doing so much for her.

 

[Briarmom]

Another member of the club checking in. I'm so very sorry you're joining.

I would call Hospice as well and see what kind of services they offer in your area. When my Grandma was in her final weeks we had them come and help. In the small town she lived in, they were only able to come for an hour a day, so we were in charge of making sure she was comfortable and clean. We really thought (based on past family experience) they'd be there for most of/the whole day. But they simply didn't have those resources.

I can tell you that I don't regret a minute of it.