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 Whining or venting? 
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Whining or venting?
Hmmm, couldn't find just the right forum to post this.

Background—husband age 70 dx first with Parkinson’s (about 3 years ago), dx with LBD a year ago. The dementia was obviously progressing all of that time. Long term memory fine, which allows almost normal interaction with long term friends and family. Executive function not so good—I have to help him dress and get into bed correctly. No major bathroom issues YET.

I am/will be the primary caregiver. We have no children or nearby relatives. And limited income to fund future care.

He thinks he only has Parkinson’s and knows that it is progressive although the physical decline is slight. He has been told he has LBD but doesn’t seem to comprehend it. He has had no curiosity as to what will happen.

I am the only one he has.

Sooo, how do people cope with:

Loss of the totality of your own life. When you are relatively young, there will be life after the end; when you are elderly, not so much.
Discussing finances and the future with a spouse who still understands most stuff, but you can’t talk about why certain financial and residential decisions should be made without blasting him with the sordid details. Hey, haven’t we all said we never, ever, want to end up in diapers?
How do you maintain the emotional feeling of loving the LO when he/she turns into a different person long-term and forever? (This one is hard to bring up.)
What about your own failings? If you can’t “suck it up,” you are a failure and bad caretaker. Sure, I know no caretaker is perfect, but that’s not what I’m referring to.
How to keep the LO from thinking he is a burden (something else we all say we don’t want to do). I am cranky and crabby most of the time and try to aim my anger at myself or life in general.

Fri Jul 09, 2010 12:59 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
All good questions.

We talk about this one a lot at our caregiver support group meetings -- How do you maintain the emotional feeling of loving the LO when he/she turns into a different person long-term and forever? The spouse caregivers seem to have a harder time with this than we adult children caregivers. The spouses change their feelings over time. They have to remember the love they once had for their mate while they now have a relationship closer to parent-child.

Fri Jul 09, 2010 1:16 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Gail - this is the hardest job anyone will ever have, in my opinion. It is difficult emotionally, physically, financially and in every other way possible. It is not fair to anyone and it never gets better. I remember last fall when I was at my wit's end about my father who has about a dozen possible diagnoses. I went to a counselor at the memory center at my local hospital, and she said that the one thing that would get better is that eventually he would lose his cognitive abilities to the point that he would become much calmer. I have to say I was looking forward to that for both our sakes! He just started to be in that lala land state, when his neuro put him on Aricept and Namenda without consulting with me or my sister, his PsOA. Within weeks his cognition came back to the point that he is constantly frustrated and angry almost all the time. Enough of this - we will be asking to have these meds reduced or eliminated.
Anyway, getting help from counselors and support group members as well as this forum and the LBD chat are about the only way of keeping it together for me. If you have friends who are/have gone through similar situations they can be of enormous support. The friends and family members who haven't can get burned out pretty quickly from listening. You really do have to do something to take care of yourself mentally and physically, even if it is something small each day. You have to refuel, and like you said, your life will go on particularly if you are a lot younger and you need your own health maintained.
Can your far-away relatives give you some respite at some point? Like could they come for a visit for a few days so you could get away? Is there an adult daycare center where your husband could go for a few hours a week even?
You really don't need to beat yourself up about being a bad person because you don't feel like Pollyanna about the situation. Nobody likes it and we all lay some amount of guilt on ourselves for having feelings of resentment, anger, frustration and hopelessness. Some of us, women in particular, are really quite accomplished at feeling guilty, me included. This disease turns your life upside down, no question about it. Anyone who doesn't have some amount of negative feelings about it is just in denial in my opinion! Let yourself cry once in a while too - that can help.
Another tip - some of us who have met through the forum and have become cyber friends have exchanged emails and phone numbers through PMs. We converse daily - venting, supporting, sharing recipes, whatever. That has been enormous support for me as well.
I keep thinking what it would be like if my husband develops some awful condition and I have to go through this again but with a spouse. I do think it is even harder for spouses, like Robin just said in her posting. It adds a whole dimension that the parent/child thing doesn't have, although that transition of being the child to having to parent your parent is not an easy one either. Especially if your parent was very independent and stubborn, like mine! LOL He would probably have a fit if he knew all the things I'm having to do to his house just to keep it maintained because it's HIS house and he still knows what needs to be done and not done, in his mixed up state of mind.
Anyway, take a deep breath and try to find at least some small ways to take care of you. Sending a big cyber hug, Lynn

Fri Jul 09, 2010 7:43 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
This forum has been very helpful to me. Also, the LBD CaringSpouses forum on Yahoo which is just for spouse caregivers of LBD. I got the link from Irene, the moderator of this site.

There is no question that being a 24/7 caregiver of a Lewy-afflicted spouse is the most difficult possible situation! The site I alluded to has literally saved me from going off the deep end a few times and other members have said the same. We are very dependent on one another for support and encouragement. That is true of this site, as well, but the other is more amenable to personal and emotional posts, as it is a private forum.

God bless you---we're all in this together. Lynn [LTCVT] has been a special friend to me, too, and often provides me a much needed chuckle during some tense times. [Thanks, Lynn! :lol: ]

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Fri Jul 09, 2010 10:21 am

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
if you check under respite (last heading) and go down a bit there are a number of postings by Renata, Diane, Dorothea and Manymoons. These have walked where you are heading
The one titled poems has some beautiful writings and comments in it.


Fri Jul 09, 2010 6:18 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Whining or venting?
I saw this short Q&A today in "CaringToday" magazine and thought of this thread.

(I dug around on and couldn't find this Q&A online.)

From CaringToday magazine
Summer 2010

Q: I've been caring for my ill husband for over three years now and feel ashamed that I am often down and frustrated. I love him so much but I'm weary and wish I could find some release since I can't tell him how I feel.

A: It's important to connect with others in similar situations. The Well Spouse Association might offer just the help you're looking for. According to Richard Anderson, Well Spouse's President from 2005-09, the organization's goal is "to offer peer support to husbands, wives or partners of people with a chronic illness or disability. We're unique in that we do that for people no matter the illness or disability."

As an example of the benefit of going to and communicating with other spousal caregivers, here are two responses to a member's question: "How do you find happiness in the midst of caregiving?"

"Look for happiness in little things. Look for happiness in a life with meaning and purpose. Ask, what keeps me going? What gives me strength and courage?"

"So often, I hear that 'Happiness is a journey, not a destination.' I thin one has to seek the moment instead of looking for happiness."

Tue Jul 13, 2010 1:02 am
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