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Struggling as a Caregiver.

Freckles327's picture
Freckles327
Posts: 3
Joined: May 2016

 

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    I am new to the forum, and basically joined because I have nobody to talk to and I'm not in a very good place mentally right now.

    I am 31 years old. My boyfriend is 33 and recently was diagnosed with Hodgkin's Lymphoma for the second time. We've been together 6 years, and I was not in the picture his first go round with the disease, as he was in remission for over 10 years.

    Symptoms started last summer and resembled mono. At least, that is what he convinced himself he had while he ignored it for 3 months. I begged him to go to the doctor as he could barely get out of bed, fatigued easily, and woke up drenched in sweat every morning. I thought tried to get his parents to help me make him go to the ER, and they basically brushed me off. So, finally, in early fall, he had no choice but to go because our family doctor took one look at him and sent him straight to the ER. It did not take them long (after a lymph node biopsy and several scans) to conclude that the lymphoma had returned.

    In 2014, we had just opened up a grooming salon together along with a third partner. The business was going well, expanding rapidly. My boyfriend and I were working there full time, and we were excited and amazed at how fast the business grew. It seemed like a whole new pathway was opening up for our lives and future. And it all has just come screeching to a halt.

    I have just felt so out of touch with his treatment. We do not have any children together, but I do have a 10 year old daughter. Between my daughter and running the business, and with one of our incomes dropped, I wasn't able to take time off of work to go to appointments with him. I was able to go to one chemo session. Instead, his parents (who are very attached, retired, and well off) have pretty much engulfed any role I could have had due to a plethora of free time and no financial worries. 

    The doctors recommended my boyfriend have a bone marrow transplant. The original admission date was supposed to be right after Christmas 2015, but his counts and progression kept hindering the admission, so it was only last month that he was admitted for the transplant.

    He is in a hospital that is a two hour drive for me. I have anxiety issues, and can't take the highway into big cities, so I drive the back way. I am only able to go up once a week (he was admitted April 21st.) 

    I feel more and more distanced and kept in the dark. I ask for updates...they are not offered. I am completely overwhelmed by the business, finances, my whole life is just too much for me. It takes a toll when you can't be there for your partner, but meanwhile you have to look at photos of others visiting him in the hospital everyday. I feel like an unwanted bystander in what used to be my life.

    I feel constantly anxious and trapped inside my own thoughts. I have imagined the business burning to the ground and the idea fills me with such a sense of relief. I want to just take time off, but as one of two dog groomers in the salon, our growing business would take a major financial hit...and so would I. The business doesn't turn enough of a profit to support me if I don't work. And I can't let my other business partner down. 

    I feel like I am doing everything I'm not supposed to. By staying behind and "holding down the fort" I am not there to support my boyfriend. I don't sleep well. I am snappy and angry. Everything is too much. I have tried to explain it to my boyfriend, when the thoughts get really really bad...because otherwise I wouldn't burden him, and I just don't think he has it in him to care. I have expressed that I feel excluded and miserable and depressed and scared. I don't know who to talk to now that he isn't here.

    The transplant went well, and he is still in the hospital in this recovery stages. When he comes home, I won't even be able to support him, as he will need 24 hour monitoring for at least two weeks. So, his parents have taken that over, as well. 

    I don't know what to do. I know maybe I sound selfish...but I have held onto this for too long at this point. My thoughts are beginning to scare me
    .

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

Freckles, you begin and end your post with the statement that mentally you are not doing well.

It sounds to me that you are overwhelmed and stretched in too many directions.

There are too many relationships here that can suffer and so many dynamics involved.

I think that contacting a social worker/psychologist might be beneficial.

Otherwise I agree with Mary's post. You need to weather this storm.

 

Steve.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3468
Joined: May 2012

Freckles I certainly agree with all that GSP2 noted.

You handing-off your boyfirend's day-to-day care is an adaptive reaction to being overwhelmed. It is probably a GOOD and healthy thing. If you cannot deal with the situation at the moment, then it is better to recognize that and regroup.  It is not uncommon for a loved one with cancer to simply become too much for some people to deal with.  When I was in rehab from an accident decades ago, learning to walk, my mom "blew up" one day, screaming she "could not take it anymore," and such.  I had no idea that she was even stressed prior to that. Fortunately, by talking, we got her over the feelings that she had.  Decades after that, she got severed dementia, and my brother cared for her for several years, untill her passing.  He nearly broke down, and one day made the comment, "You cannot live with a demented person for years and not become demented yorself."  I don't know, but I know he did her caregiving too long.  There is such a thing as running out of coping ability.

I think it is calming to have thorough information about a condition, so I would think that you knowing his condition and prognosis in detail would actually be better, even if you are not his direct caregiver.

Your issues sound more anxiety related than like depression. There are meds readily available that can relieve this short-term. Do see a doctor, soon.

Like everyone else writng here, I claim no medical training and no clinical expertise, just personal thoughts. I wish you and him well,

max

paella's picture
paella
Posts: 81
Joined: Jun 2012

These may be unrealistic but:  1.  Can you hire a pinch-hitter groomer for those first 2 weeks?  You won't have to drive 2 hours to really fully caregive...something that you are feeling quite guilty about, obviously.  I'm betting you can find someone without much trouble who would be willing to work for you while you take a short pause (paws - ha ha).  2.  Any chance you can confide in his folks?  If so, perhaps they could take care of your daughter occasionally during those 2 weeks.  3.  My bet is that your 10 year-old can help out during the first 2 weeks and will feel involved, trusted and important.  

And, finally, a quick question:  Do you feel that your boyfriend begrudges the fact that you can't be there as often or for as long as his parents?  Who is his "official caregiver" (my understanding is that you can't undergo this long process of transplant without a designated caregiver).  Is it you or is it his parents?

Paella

Freckles327's picture
Freckles327
Posts: 3
Joined: May 2016

Yesterday, on +11 day of the stem cell transplant, my boyfriend was doing so well they released him! It just so happened I was so emotionally and mentally drained that I had decided to take that day off of work and go up to visit him. So, I was able to be the one to bring him home! I spoke to him about how I was feeling, and he pretty much told me he had been keeping me "out of the loop" on purpose as to not give me more to worry about. I didn't find the reason acceptable, as being left out was actually more hurtful than just being included, but I found the sentiment to be sincere and something I understand, as obviously don't like to burden people with my problems, either. In light of his early release, I took off work until Tuesday so we can hang out together. He will need constant supervision so next week, while I am working, he will go to his parents during the day and come home in the evenings. 

 

We will get through this in one piece. The worst is over now, I feel, and we can all focus on recovery.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I am glad things have gone the way they have. Now you can help him with the rest of his recovery. 

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

This is such great news to know that your boyfriend is back home.  Brighter days are here for both of you!

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