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. 

It’s Party Time!

For someone who claims to be fairly anti-social and introverted (me), I do love a good Christmas party!  We have two parties planned for today as well as one or two several items left over from my to-do list yesterday. 

Our first party is the online “Caregiving.com Progressive Blog Party.” 

 

I participated last year and had so much fun!  I was introduced to new sites helpful to caregivers as well as had fun visiting other caregivers with their own blogs.  It’s interesting to visit the other caregiver blogs because I learn so much more about caregiving!  Whether it’s how to have a sense of humor even while watching Hubby disappear into Lewy Body dementia or learning how to gain the strength it takes to help your child through an undiagnosed heart defect which eventually led to Pulmonary Arterial Hypertension and a possible future heart/lung transplant or teaching how to take a calm, healthy approach to caregiving while also educating about senior LGBT caregiving issues, all have something for someone.  

 

Other caregivers are participating as well and more usually join throughout the week.  If you are a caregiver and want to join, please visit here to find out all the details.

 

Oh!!  And there are prizes!  Who doesn’t love to get a gift at the holidays (or any time!). Caregiving.com is hosting this blog party and there are door prizes for visiting and commenting on that site. 

 

Party two is going to be a little trickier.  Robert was congested yesterday but didn’t seem to be feeling too sick.  He even got a few of his Christmas cards done (Okay, he did five.  Five!  Considering his list has grown to 40+ over the last few years, some people may be getting Easter cards).  He loves doing the cards (I’ve asked him if he wanted to skip it and he always says, “no.”).  He also likes to write a personal note in the cards.  A long note.  A painstakingly very long note.  He can’t just write, “Love, Robert.” 

 

Easter is our goal date now . . .

 

This morning, Robert woke up with a fever, cough and one of his eyes almost swollen shut (which I’m assuming is from a sinus infection).  I’m letting him sleep in and haven’t yet made the call whether or not we attend Party Two.  Hubby’s family gets together for great food (they never disappoint in that area!) as well as a fun ornament exchange.  Robert is always invited and it’s fun to see people I don’t get to see often enough.  Hubby and I usually keep our eyes out for clever ornaments throughout the year so we can pick just the right one for the party. I would hate to miss it but, unfortunately, caregiving throws a lot of curve balls and doesn’t really care what time of year it is (or what party might be missed).   

 

I’m hoping Robert will be feeling better with a little more sleep.  There’s the promise of meaty lasagna which he will not want to miss!  Robert is definitely not anti-social or introverted – the boy loves a party and, well, food. 

 

Plus, he has to get better so he can work on more of his Christmas/Easter cards today!

 

Hope you can join us this week for the holiday (blog) party!

 

The Faces of Caregiving: Kathy - Lewy Body Dementia

Caregivers are everywhere. Caregivers are people who might be in line with you at the grocery store, next to you at the doctor’s office or sitting a few pews behind you in church.

They might be that person in the slow lane you’re cursing because they seem distracted (sorry).

When buying protective briefs for Robert, the cashier at CVS told me his dad was a caregiver for his grandfather. He then shared a tip about what brand worked best for them (Tena was their favorite).

That’s one of the many things I love about caregivers – the willingness to help and share information with others.

While caring for Robert and reaching out to other caregivers, I’ve met some amazing people. Each story is different but there is a recurring theme: advocacy. Aside from caring for a loved one, these people have taken the time to help others.

In this series on family caregivers, I’d like you to meet a few of those individuals who not only are caring for a family member but who are also vocal advocates.

Today, we meet Kathy who cares for her husband who was diagnosed with Lewy Body Dementia in 2007. 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. Congratulations, Kathy!

Kathy answered a few questions for us about her caregiving experience and her advocacy work. Please contact Kathy through her website if you have questions about her experience or about Lewy Body dementia.

Robert’s Sister:   Tell us about your caregiving situation.

Kathy:  I'm Kathy a 49 (maybe 50 by now) year old spousal caregiver. My husband, affectionately referred to as Hubby, was diagnosed with Lewy Body dementia in 2007. (Note from Robert’s Sister: Happy Birthday, Kathy!)

Robert’s Sister:  Tell us a little bit about the disease your Hubby is facing.

Kathy:  What is Lewy Body Dementia, you say?  Well I'm glad you asked. It's the second most common form of dementia after Alzheimer’s and the most commonly misdiagnosed because it has symptoms similar to Parkinson’s and symptoms similar to Alzheimer’s yet needs to be treated differently in a lot of ways. Why is it so often misdiagnosed? Another good question! Apparently not too many people have heard about it. Until Hubby's diagnosis I never heard of it and I've been surprised by the number of health care professionals that have never heard of it so I'm always happy to teach them. Here's a link if you would like to learn more about it.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Kathy:  For me, the biggest obstacle I've faced is balancing Hubby's independence and dignity with his safety. My head and heart still juggle and struggle with the facts that this is still a once independent and proud grown man. My husband, the head of our family. And now he needs 24 hour care and attention due to his confusion and loss of life skills.

Robert’s Sister:  How did you overcome that obstacle?

Kathy:  Hmm, to start with I am a woman of Christian faith so I pray A LOT! I remind myself that Hubby's safety comes first and foremost. I've had to learn to be emotionally forceful in my decisions concerning him. It's taken a lot of prayer to get through some of those difficult decisions. I'm still learning though so I guess I'm less overcoming and more getting through.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Kathy:  I haven't really gotten highly involved in any organizations like the Lewy Body Dementia Association or the Alzheimer’s Association. As Hubby's 24 hour caregiver it's difficult to leave the home and participate in outside activity. All of my involvement is on line. The biggest thing I'm involved in is caregiver support. I'm involved in an on line spousal support group for Lewy Body. It's my "go to" for "in the trenches" caregiving. The reality is that spousal caregiving is very different than other family or friend caregiving. There are certain intimate struggles we face that many are not comfortable in sharing publicly.

I also found a home on caregiving.com. A place for caregivers of all kinds, spouses, children, partners, friends with various caregiving needs, not just dementia. I've enjoyed the "family" feel there and have made some friends I feel very close to. The support we offer and receive is exceptional and in my own opinion, beyond compare. Like I said, family, all uniquely different, yet all the same in needing and supporting each other. That's how we met.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Kathy:  I originally stated keeping a journal of living with Lewy Body Dementia. More as a way to chronicle what was happening with Hubby for the doctor but also as a way to "self help" me and my feelings. I had searched for information about Lewy and found little to no information as to what we were dealing with on a daily basis. I was able to find some technical information about it but I wanted to know how to get through the challenges, what did someone else do? So I decided to blog about our lives, the struggles and challenges, the joys and the laughter. What worked, what didn't. Real life stuff. I wanted to share with anyone that was searching for the same thing I was. I wanted to use this experience to reach out to others and let them know they were not alone. After consulting with my (adult) children and getting their feedback, I think it was a great decision.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Kathy:  I started blogging (read above answer), on a small personal blog and larger caregiving.com scale. I also print off and share information about Lewy Body Dementia that I happily and sometimes pushily (can I make that a word today?) share with anyone from home health aides, nurses, doctors, emergency personnel or just about anyone within paper shoving distance. I'm not shy.

I was asked to participate in the CareGifters Book series so I'M IN PRINT! Autographs on request dahling (adjusts big sunglasses) ;-)

I like the fact that all the proceeds of these books go into a caregiving.com fund for caregivers and when a caregiver has a need they can apply for the fund and receive $500 toward that need. I feel like it's my way of helping more caregivers.

Robert’s Sister:  Is there anything else you want people to know?

Kathy:  I like chocolate. Umm I guess that's not what you were asking, was it? (Note from Robert’s Sister: no, but good answer!).

But seriously, yes I would like people to know that once you've met one person with dementia, you have met one person.

Dementia isn't about forgetting or losing just your memories. It isn't as if the memory slipped away to later be retrieved, it's about losing them completely along with your life skills. It's a disease of the brain that slowly removes all traces of anything the person knows. Even though the person with dementia may seem to not be there, they didn't disappear, they are still locked inside the disease. They still deserve respect, to be treated with dignity and acknowledged.

Also know that yes, dementia is very sad and there are a vast many struggles associated with it, but there are also very good days. Try to find something good in the day even if you must seek it. The more you look, the easier it is to find.

Robert’s Sister:  How can people contact you if they want to learn more about Lewy Body Dementia?  

Kathy:  I love people and I'm happy to share what I know (sometimes perhaps too much).

I can use all the prayer warriors, well wishes, finger crossers and pixie dust sprinklers I can get. My personal blog is http://www.thieflewybodydementia.com/ or you can find me on www.caregiving.com. Also, I'm a Facebook junkie and you can see me at https://www.facebook.com/kathygill.lowrey. I also tweet but I am NOT good at it. Somehow I can't get in the groove of it at https://twitter.com/phatkathy.

Hey, Thanks for having me, Trish!! I appreciate the opportunity to share a little about Lewy Body Dementia. I've enjoyed spending time with you and your readers. You have a lovely group of friends here.

Robert’s Sister:  Many thanks to Kathy for her time and willingness to share her experiences! 

Next, we will meet G-J who cares for her husband, Steve who was diagnosed with early onset Mild Cognitive Impairment (MCI).