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Caretaker exhaustion 
Started by Mirela
29 Aug 2012, 4:16 AM

My father is sick with lung cancer with metastasis on his bones and brain. He's been living with me and my husband for the last 4 months and I've been his primary caretaker. I'm also 4 months pregnant. My dad has been very hesitant to go to hospice and as his care needs have incrased, I've gotten more and more exhausted, frustrated, and stressed. He finally agreed to try hospice and he is going in tomorrow.

He requires a lot of support and I've done everything from meds, food preparation, lifting him off the floor when he's falling, helping him to the bathroom and in the bathroom, bathing him, talking with doctors, nurses, aides, etc...

My family has been supportive for the most part. They praise me for taking on this responsibility and helping my dad. The problem is we don't have any family near by (5, 6, 15 hour flights away). My dad's sister is not happy about him going to hospice and keeps telling me how sorry she feels for him, how he doesn't deserve this (going to hospice), that we should hire a caretaker for him so he can stay home when I can't help him, etc. Although I understand her and appreciate her worry and love for her brother, she is making things so much harder on me.

Has anyone had a similar experience?
How do I kindly tell her to back off and let my dad and I figure out what's best for him and me in this situation? I figure if she's not willing to drop her life and come take care of him, she should just stay out of it and keep her opinions to herself.      
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Reply by Tian
29 Aug 2012, 6:04 AM

Unfortunately the content of my previous post did not appear. Hear is something like what I said.

Dear Mirela

First of all I wholeheartedly commend you for the great care you have given your father and that includes realizing that it is now best for HIM to go to hospice. However I think it is natural for your aunt to be very concerned about her brother and is entitled to an opinion. But her opinion is wrong and adding to your already huge stress. She is not aware of the intense care your father requires so I'm wondering if it is possible for someone on the hospice staff to explain the situation to her and let her know that you have indeed been acting in your father's best interests. Again you have my deep admiration. Don't neglect yourself.
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Reply by Mark99
04 Sep 2012, 1:19 PM

Mirela: Just getting to this post now. Though what you wrote and your care for your dad is heartbreaking I had to smile at your last paragraph. You asked how to kindly tell your sister to back off. Well I have to say you said it clearly and pointedly. I got the message. Say like you said to us and she will get your message.

My wife had lung cancer as well and a year ago this past August passed away. She was diagnosed in 2009 and I was the caregiver until she went into hospice last July. Though I was not pregnant and her cancer was well managed I was the only caregiver to ensure she got to all her appointments, meds, etc. There were times when I would be heading home from work and would sit on the stoop and wonder what I was walking into. What was Donna’s state of mind how was she doing? Those doubts and fears hurt me because I wanted to be strong and there. I finally came to realize that that was part of the experience. It was the fabric of the care and the love. I was able to better reflect on her and me and us. My questioning was part of my understanding.

When Donna went into hospice there was a few days that the staff at the hospital where she went for a procedure that didn’t work wanted to send her home for home hospice. They took one look at me, my state of mind, at Donna’s declining status and put her in hospice care. I can only say what I’ve come to believe ‘Hospice Saved My Life’. I was able to deliver better care, more powerful care by being freed of the daily routine and managing the staff. Hospice freed me up to spend time with Donna, ensure she was cared for, and gave me the chance to catch my breath. It was not easy going home in the evenings or leaving her but I knew the staff was professional, smart, caring, and had me to content with. They allowed me to manage her, manage my life, and have time to be a husband who was loosing the love of a life time.

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Reply by Pooka
06 Sep 2012, 12:19 AM

Mirela, I am kind of in your spot or have been there. My husband is now on hospice. Since then, we have had tons of family members chiming in on how to care for my husband. I can not tell you how many times I have gone to the bathroom and knelt at the closed toilet and sent up prayers for God to help me to tell them how to back off. It was hard. But as I quietly listened to God, I realized that they are just hurting. I found ways to allow them to help in their brother's care. What has happened is, now they realize just how tough a job it is being a caretaker...and my house is clear. They do not come over, believe it or not, as often. When they do come, the time is short lived. I realized that they are dealing with fear...wanting to take care of their only brother-afraid of him dying. He has 5 sisters. I used this time to give myself a little peace by leaving the house--Taking naps. I did not want to at first. In the beginning, they worked my nerve wanting to sit in on the hospice visits, talk to the social worker...pretty soon, my husband started asking them if they were looking for something. They got the message and backed off. I don't worry about it as much now. But I know that there will come a time when they will flood the house again. All I can tell you is to have a little patience. Maybe...allow her come in and help out and sit and all that stuff...She will will get the message. If she is not there to do that...take what she says with a grain of salt and keep it moving.
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Reply by NatR
07 Sep 2012, 6:05 PM

Dear Mirela,

Great replies from others already to your questions on how to cope with interference from family.

Oh my...there are days arent there?  Not only are you stressed and doing all you can but others try to tell you that it needs to be done their way, or a better way..or just that your way isnt the best.

Having made more than my share of mistakes in life...I have learned that silence...a smile and a nod is enough.  Take a deep breath...allow the input...but remember that you are doing the job.

Keep doing it...say thank you...and keep on doing what you feel and know is best for your circumstances.
You could say more but it will fall on deaf ears.  I am guilty also...of trying to share my point of view or my input on someone else...and I have to remember that they can listen..but in the end...if it isnt right..my advice is just that..mine!

Proud of you for handling it so well this far.  Great input from others who have walked in your shoes.  

Sending you a hug today and hoping that you can feel the sense of humour and warmth from those that wrote to you.  Some days...instead of crying..it helps to just sit down and laugh...maybe til you cry...but honestly...you are doing just fine.

Do your best, think whats best for your father, and carry on.  Its a lonely job being the caregiver.  No one really wants to do it, but they love to tell you how they would do it.
But its really hard to get someone to come and take their shift...isnt it?

One more thing...doing this while being pregnant...quite a challenge.  Do take care of you and your baby:) You are going to be a wonderful mom as you are already a wonderful daughter.

Best wishes,
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Reply by Mirela
07 Sep 2012, 7:12 PM

Thank you everyone for your kind words and support.
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Reply by moderator | modératrice
08 Sep 2012, 6:58 PM

Hi Mirela,

How is your Dad doing in hospice? Did you see this thread where other members tell Pooka about their experience with hospice:

hospice started-what do I expect?

How has your experience with the hospice been so far?   
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Reply by ElephantMama
27 Nov 2013, 4:33 PM

I have been unable to find anyone who had a similar experience as I and wanted to see how everything went for you. I was my grandmother's hospice caretaker this summer for 2 months before she passed on July 26. One of the hardest, most exhausting, and emotionally traumatizing experiences of my life. I also happened to be pregnant when we learned of her terminal illness that took her so quickly. So, I was caring for her around the clock while also dealing with my pregnancy. I lost the baby the same day on July 26 at a day short of 17 weeks after hours of labor and delivery. I learned only later that night that my Gramma had passed as I was being rushed to the hospital earlier that afternoon. I say all this really just to say God bless you because the experience of both pregnancy and hospice caretaking is beyond what most could even imagine.
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Reply by moderator | modératrice
27 Nov 2013, 5:28 PM

Welcome to Virtual Hospice, ElephantMama. 

I can't imagine the pain of loss that you've been experiencing. It sure underlines the undeniable reality of how exhausting (emotionally and physically) caregiving is, even with the support of hospice.

As far as I can tell, your story is unique among the members currently sharing on Virtual Hospice. But we have several members who are dealing with caregiving and managing their own health (physical, mental, emotional and spiritual). 

Thank you so much for sharing your story.

Tells us a bit more about how you are doing now? How do you manage your loss and pain, and daily life?
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Reply by Tian
27 Nov 2013, 5:44 PM

Dear ElephantMama

In a more just world it shouldn't fall on a pregnant woman to be the primary careperson for a dying family member. But to lose the baby the same day as the family member seems simply cruel. I greatly admire you for caring for your Gramma under extreme circumstances and for how well you seem to be recovering from your losses. I think you are a good fit for this website because your experience can help others who come here and, having so much to recover from, you can seek help if the need arises.

With sincere condolences
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