Decisions in Caregiving: Placement

Decisions in caregiving can feel MONUMENTAL.  The decisions that must be made as a caregiver never seem to be easy unless it’s what to have for dessert (Rocky Road ice cream, of course – when Robert’s visiting anyway). The decisions in caregiving have such finality to them that it can feel decisions cannot be “undone” which makes them all the more stressful. 

As promised, I’ve invited a few caregivers to share the decisions they are struggling with or facing right now. 

Kathy Lowrey started as a wife and mom at 19 years old.  Now a grandmother (and still a wife and mom), Kathy cares full-time for her husband, lovingly referred to as Hubby, who was diagnosed with Lewy Body dementia in October 2007.

Kathy and Hubby

Kathy blogs on Caregiving.com and on her website, Living With a Thief Named Lewy Body Dementia.  Her website was recently chosen by Healthline as one of the 25 Best Alzheimer’s Blogs of 2012. 

Kathy writes honestly and from the gut about what she goes through as a caregiver. Kathy says, “If just one person finds comfort in my blog, I will feel like it was a success.” 

After having cared for “Hubby” for many years in their home with minimal outside assistance, Kathy and her husband are now struggling with the decision of whether or not to place him in an Assisted Living Facility.

I deliberately said they are both struggling with that decision because, as a caregiver, Kathy has made herculean efforts to be sure her husband’s emotional and physical well-being are priority number one (not always easy when Lewy Body dementia robs her husband of his memory, his sense of self and even his recognition of who “that lady” is who lives with him – Kathy). 

The following post from Kathy was originally posted on her website and on Caregiving.com and it really shows the anguish a caregiver goes through when facing the placement decision.

In Kathy Lowrey’s words:

I hope this makes some sense because my thoughts and emotions are so scattered lately. I feel like Hubby and I are in an emotional blender.

I've struggled to support myself and Hubby and unless the support was "easy" to give and receive, I've remained silent.

Unless I was sure what to ask for or offer, I've remained silent.

To the majority of my family and friends, I've remained silent.

Now is the time to break the silence because the silence is breaking my heart.

Hubby has had some serious anger issues. Nothing physical, just verbal. And that's not really the problem since we have lived with his PTSD for our entire married life, I'm used to it. In the past, he could leave or I could suggest he leave and go someplace or I could until he cooled off. But now he feels trapped. Trapped by me, the doctors and his Lewy Body dementia. He doesn't want to be here. He's mad at me, the doctors, his illness, the whole world.

If I was in his place, I would probably feel the same way.

He's also sad, very, very lonely, frustrated and scared. All the things I wanted to prevent for him and have not succeeded in doing right now.

All I can do is watch as he fights with his emotions and listen as he vents his frustrations. Most directed at me and admittedly they hurt but I understand where they are coming from so I try my best to ignore the feelings that come because of his words.

What can we do? How can we fix this? We are maxed out on meds and some of my big fears are more would make him "drugged" something neither of us want. He's sick of taking pills anyway and I don't blame him.

He has had some very lucid moments and we have talked about his dementia, his feelings and a few of his fears. Then HE suggested that perhaps placement would be the best.

Oh my heart! I HATE Lewy Body dementia. I hate that he can have these moments of clarity. I HATE that he realizes what is happening. I HATE HATE HATE IT!!!

At his suggestion, we have talked Nursing Home placement on several occasions. Sometimes he says he wants to leave, other times he says a Nursing Home is not where he wants to be, but he doesn't want to be here. Sometimes he says he doesn't want to be a burden. I've tried to assure him that he is not a burden, perhaps difficult at times but never a burden.

He and I have both spoken to our children about it.

I have to add that we are very blessed with the support that they offer us. They may not like the situation but they support whatever decisions needs to be made in the best interest of their father and me. How did I deserve such amazing gifts when I received them?

It took a long time to bring it up to them. Hubby and I both fought emotions about it. We've cried together and separately, I've prayed for and over him. I still fight back tears and it's taken a lot of emotional strength to put these words down. Even more when I hit the post button.

I've read more than once that it's never too early for placement when dementia is a concern. But it can come too late.

Late for the caregiver who is stretched beyond their capabilities and health. Late for the loved one who may do something that could potentially be life threatening to themselves or to others.

And if you're already talking about it, now is the time to make the move.

My head knows all of this, my lips and fingers have repeated it to others. My heart won’t get on board.

I've tried to find things for Hubby to be engaged in yet he refuses. So, I wonder if a different environment and the company of other people would be in his best interest. At least that way he could refuse to participate or engage with someone other than me.

I'm sure it wouldn't help with how he feels about his illness, the doctors, the situation or me and all of his losses but perhaps with others he could "vent" to, it would help release some of his anger. Maybe he could deal with it better. I don't know the answers. I'm grasping anything I can to get even a small hold on a constantly slipping situation.

Neither of us has decided anything but Hubby wants to talk to a doctor about it. He has an appointment in a couple of weeks.

Confession: His wanting to do this feels like a bit of rejection of me but I have to shake that off and realize, this isn't about me, it's about what's best for him.

I did tell him if he wanted, we could tour a facility and nothing had to be permanent so if he did go in and then decided wanted to go home, I would be loading him up and bringing him home.

Please say a prayer for us. We need clarity of mind and sure direction.

 

Thank you, Kathy, for sharing such a personal struggle. 

 

What decisions in caregiving have you been torn up about?  What decisions were easy?  Do you have any regrets about the decisions you’ve made as a caregiver?  Feel free to discuss in the comment section or email me at robertssister@att.net if you’d like to tell that story.