New Member, Frustrated and Burnout by Needy DW with EO and Metastatic Breast Cancer

DLM122

Dear Members, I’m a new member likely experiencing what all of you go through on a regular basis also.  DW diagnosed with Metastatic Breast Cancer (MBC to the Bones) in 2014 at age 47. First signs of cognitive impairment in 2016 and diagnosis of EO in 2019.  I would estimate she is in the early Stage 6 phase as I must help her go to the bathroom, can not follow the simplest of instructions (can’t put on flip flops or get water from the fridge water dispenser even with detailed, slowly provided instructions) and a great deal of difficulty getting words that don’t make sense to speech. I’m 54 and DW is in constant need of one thing or another and I can’t go to the bathroom without her coming to find out where I am and what I’m doing.  I have a LTC policy for her and began in home care last summer so that I could attempt to work.  DW doesn’t want “someone” in our house and it’s a struggle each day.  I can work from home when not seeing clients but she constantly interrupts and wants me to do things with her.  When I leave, she would argue with caregivers and threatened to hit one. I finally found someone three weeks ago who has worked at a nursing home for 17 years and she’s absolutely amazing!! She knows it’s the disease causing the behavior (fortunately), but it doesn’t make it any less stressful for me when DW is responding as she does.  Compared to many of the posts I’ve read and the length of time members have been doing this, I haven’t been doing this nearly as long.  I’m frustrated, feeling incredibly burnt out and all I want to do is sleep or get the hell out of here, which isn’t an option.  I’ve got two kids in college who have their own issues to work through which I try to help when I can, a great career that it feels like is going down the drain and I’m feeling a bit guilty because all I want to do is go away some place and have some fun!! To further complicate the issue, continuing her treatment for MBC seems questionable because what, we need to continue treating it so she can eventually get to a nursing home??  So, now that I’ve vented (thank you very much for reading this far), I’m contemplating putting her in a MC facility because I’m starting to become not so nice at times.  I’ve told her in the past that I don’t want to do so.  Lately with my frustrations clearly showing, she’s started going through crying spells each day saying that I’m going to put her in a home and that I’m going to leave her all alone. I’m on the ledge, any thoughts or suggestions from members who’ve dealt with similar (doesn’t have to be exact) circumstances would be greatly appreciated.

Hoot619

DLM, I think your on the right track, I hope you have her on a list for Memory care places. And if one comes available take it. You can still care for her but not like now.

This disease is a taker on both sides. I was also getting fed up with the caring. It's so hard when nothing works like it should.  My wife passed last week and now I am missing her. The wife I used to know, not like she was when she passed.  I'll have you and yours in my prayers.

Finding a place for her could take a while, so please get started on that. Hoot

Ed1937

D, welcome to the forum. Sorry you have a need for it. She was diagnosed at a very early age. Did you apply for Medicare disability? If not, that should be done ASAP. I don't know if they will backdate benefits from the date of diagnosis, but EO is comparatively easy to obtain disability help. 

It sounds like you have been a caregiver (not only for dementia) for a very long time. And it's easy to understand why you may be burned out. It doesn't matter how long you have been doing it. Only you will know when it's time to call it quits. I'm sorry you and she had to deal with illness for such a long time.

Crushed

Ed1937 wrote:

D, welcome to the forum. Sorry you have a need for it. She was diagnosed at a very early age. Did you apply for Medicare disability? If not, that should be done ASAP. I don't know if they will backdate benefits from the date of diagnosis, but EO is comparatively easy to obtain disability help.

I believe you mean Social security disability

dayn2nite2

I think it's important to address the breast cancer issue in the context of dementia.  Yes, I agree, to what point is the treatment getting her to?  To go further down the dementia highway (which is not picturesque or even tolerable at all)?  And probably only to have it return in a year or two?

Have you had serious talks with her physicians on what not treating looks like?  With hospice?

Please also keep in mind that oncologists are ONLY focused on eradicating cancer.  They fail to see cancer in the context of dementia.  If you asked what advice they would give a family member in the same situation, would it still be to treat?

You've got kids who need you, a wife who's been sick for a number of years and a finite amount of energy.  I can imagine sometimes you feel like you're drowning.

DLM122

Thank you all so much for the feedback, I appreciate it.

Regarding the Social Security Disability issue, I applied for it when she was diagnosed with MBC.  MBC falls into the compassionate allowances category and the process was quite fast.

With respect to the breast cancer issue, I spoke with the Oncologist last week (I have medical power of attorney) and given the progress of her EO, her thought was removing her from the cancer drugs wouldn’t have an impact in that she feels the Alzheimer’s will take her before the Cancer does.  

I have decided to look into nursing homes as both yesterday and today it was a steady battle between her and the caregiver.  DW doesn’t want her in the house and keeps trying to leave.  The caregiver is doing her best to give her space, but when she tries leaving, she has to stop her which just makes DW angry.  DW keeps saying she doesn’t want this and this morning, for the first time, said that instead of this “just give me some pills so I can be gone.”  It’s such a horribly sad situation and both my daughter and I are stressed and it’s only getting worse.  

If I suggest going for a walk or going somewhere, DW is all in when she thinks I’m the one going with her.  When I tell her I have to work and the caregiver will do it, she immediately rejects it and the cycle starts over.  I don’t know what to do in order to change her perspective on this.  I would prefer to keep DW in our home as long as possible, but if this is whAt it’s going to be like every day, I just don’t see how we can continue like this.

Perhaps this post sounds like I’m asking permission to put her in MC, but I’m more so asking two things. Have others who have experienced these issues with PWA found ways to get around the combativeness and if not, was this their breaking point and the point at which they had to put PWA in MC?

Thanks again for your thoughts and suggestions.  DLM

Ed1937

Crushed wrote:

Ed1937 wrote:

D, welcome to the forum. Sorry you have a need for it. She was diagnosed at a very early age. Did you apply for Medicare disability? If not, that should be done ASAP. I don't know if they will backdate benefits from the date of diagnosis, but EO is comparatively easy to obtain disability help.

 

I believe you mean Social security disability

Yep. My mistake.
 

Ed1937

DLM, I don't know if this helps or not. But my wife got to the point where just about everything I tried to get her to do was problematic. She was incontinent, but that in itself was not much of an issue for me. It became an issue when she would not voluntarily let me help her change her incontinence briefs after wearing them all night, and they seemed to weigh 20 pounds. When she would have a BM I had to help her get clean, or I would have major cleanup to do afterwards, and she would still be filthy, as well as the whole room. She did not want me to help her, but I had to insist. Then she would tell me she hated me, and at times try to leave, even though if she got more than a few houses away, she would not find her way back home. I called the police three times to help me get her back into the house. She was miserable at home. It was no way for either of us to live. Our daughter and I looked at facilities, and found one that seemed good. No need to go into more detail.

John1965

Our situation and ages are very similar, except the cancer. I just placed my DW in memory care 12 days ago. I had doubts and fears, but it was the best decision. She is happy when I visit and sad when I go. But, her happiness is higher and more authentic She smiles and laughs more than  I’ve seen in over a year. 

I recommend that you seriously consider finding a quality facility and placing her. If you search my recent posts, you’ll get valuable information about the mechanics of how to accomplish placement. I’m sorry that this is happening to you and your family. I wish you the best!