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 I find it difficult to keep my sense of humor sometimes 
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Joined: Thu Apr 17, 2014 10:12 pm
Posts: 4
Post I find it difficult to keep my sense of humor sometimes
This morning I put "King of Kings" on for my mother to listen to( she is blind) I dropped into her room to see her and she told me she was listening. "King of Kings" turned into "The Ten Commandments". She was very quiet all afternoon. When I finally went back up to her room. She said " Thank goodness you came. I've been stuck in this church all day. ". I thought. How do I get her out of this church in her head? So I said she could have Easter dinner at the church and then go home to her own bed. I thought that might work. But when I got her home she thought she was on the garden and what would happen if it rained. That was when I got fed up and said. You are in your bedroom in your bed. You are hallucinating. The last 3 nights she's woken me up at 3 am and I don't get back to sleep till around 6. Then it's time to get up. After a while the exhaustion makes it hard to be patient. What do you do?


Sun Apr 20, 2014 10:46 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 86
Location: Hawaii
Post Re: I find it difficult to keep my sense of humor sometimes
My dear, taking care of your mother will be one of the hardest things you'll ever do. One of my mother's caregivers told me that , and she was right. It is crucial for you to get your sleep, so that you can be patient with your mother (and hold onto to that oh-so-important sense of humor, which I can assure you is still there in your description of the "church in her mind". The humor in this is sharing your observations with other caregivers, either here or in the support groups).

Do you know why she has been getting up the past 3 nights? Was there a change in her routine? When my mother started waking up in the middle of the night, I, too was irritated (and then got mad at myself for being irritated!). I, too, had trouble getting back to sleep, plus I was someone who really needed my sleep.

I tried warm vanilla Ensure (no chocolate, due to the caffeine). My mother ate dinner early and no snacks after that. By nightime, she may have been hungry, but was no longer aware of that feeling. I also put on a soothing CD on a continuous loop, made sure she was warm enough (or pulled back covers when too warm) and tried not to think that she was doing it on purpose. Sometimes, I'd check her diaper. Just like with an infant, it's helpful if you can find the cause(s) of her waking up.

Re hallucinations and wanting to "go home", I found the advice gleaned from some book helpful : acknowledge (empathize with) the emotional content of what she's saying, then redirect her to (/distract her with) something else, something she likes. Example: "Yes, it did rain in the garden, but that'll help the flowers grow. Let's see how the flowers are doing." If you don't want to stay with the hallucination, you can direct her attention to something she likes nearby-- perhaps photos of loved ones.

Do you have any help? Fresh caregivers can give you the respite that is absolutely essential in caregiving. Please let us know how you're doing! Hang in there!

_________________
AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Mon Apr 21, 2014 9:52 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: I find it difficult to keep my sense of humor sometimes
AnnaA, her mother is completely blind. However, she can tell the daughter about the lovely flowers she sees. At three o'clock in the morning I doubt that will be of much interest to the sleepy daughter as she stumbles back to bed. It is a hard time for them both.

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Apr 21, 2014 11:16 am
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 86
Location: Hawaii
Post Re: I find it difficult to keep my sense of humor sometimes
Dorthea, you're so right! I read that the mother is blind, but I neglected to address that in my post. Talk about lack of sleep, that's my problem today. Thank you for that important correction.

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Mon Apr 21, 2014 11:42 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: I find it difficult to keep my sense of humor sometimes
And a big smile to you and best wishes for everyone who comes to this forum.


Mon Apr 21, 2014 11:59 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 275
Post Re: I find it difficult to keep my sense of humor sometimes
And I think we all have to forgive ourselves for getting angry with our LOs at any point in this journey. It's a long hard haul - up hill all the way - so if we get tired and grumpy along the way, it's to be expected! I still feel bad about getting mad at my Mom when she wanted to buy one of every kind of meat in the grocery store, filling up the basket - for 2 people in the house. I got mad and made her put them back. I can still see how mad she was! Now - knowing what I know now - I would have let her fill up the basket - having a great old time with a big smile on her face - and then when she got tired and went and sat down (as she would) I would put everything back and check out at the till with just what she needed and we both would have had a grand day. But such is life - we have to go through the learning experiences to learn! :~

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Apr 21, 2014 12:31 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: I find it difficult to keep my sense of humor sometimes
Remember that you are only human. Sleep deprivation was a huge problem when I had my husband at home. But Lewy does have its humorous moments and you should feel free to laugh. God bless you.

_________________
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.


Mon Apr 21, 2014 12:58 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: I find it difficult to keep my sense of humor sometimes
It's very hard sometimes! My mother's delusions were all, 100%, distressing and frightening to her - her family was hit every couple of days by fires, kidnappings, carjackings, falling off balconies or roofs, a suicide, a dead body in the bathroom - but we did eventually find that a low dose of seroquel helped dispel the frightening images and ideas.

On the other hand, she has been trenchantly observant and quite funny when she could summon the energy. A new staff member, somewhat awkwardly, could not figure out what to say when introduced to her. She said, "It's nice to meet you," and held out her hand, and eventually he figured out to shake it properly. As he turned away, she turned around to me and said, quite audibly, "what was THAT about?"

I have not lost my temper with her - though it's easier as I'm only doing 2-3 hours a day, not 24/7. But I did get frustrated with my dad when he told me lugubriously that no one visited or helped him. At that point he had not said thank you in months, for everything I was doing. I lost my cool and stomped around saying "What am I, anyway, chopped liver? i am here every single day for hours!!" To his credit, he did apologize and has been very sweet about saying thank you since then. (He's 98 but cognitively intact, just struggling with my mother's situation.)

So be patient with yourself, at least as much as with your mother - you have a very tough job, and you are in for the long haul. I think even with all the problems with dementia, our mothers understand that we are doing the best we can.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Tue Apr 22, 2014 12:54 am
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Joined: Sun Apr 13, 2014 9:32 pm
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Post Re: I find it difficult to keep my sense of humor sometimes
It is good to hear that others struggle with this part of care giving...losing perspective and feeling overwhelmed and overworked and under-appreciated are all part of it I think. My husband just had open heart surgery, that part was a walk in the park compared with how it affected his cognition and behavior. No matter how much I do, he is not happy because he thinks I am never there for him--(I work, he is long retired). I cannot stand to stay home with him and be his 24/7 caregiver so I hired an agency. He gets very demanding and treats me like his personal manservant, so I hired someone to take over this aspect of his care. We have been married two years and our life together has been one crisis after another as the symptoms appeared. Having the relationship he believes we should have is impossible due to his cognitive issues, yet he doesn't recognize any of it.

So, I am trying to enlist the help of his daughters and friends, so that I am not always the one on the hot seat so to speak. It just feels like one mess after another most days...
Elizabeth


Fri May 02, 2014 4:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: I find it difficult to keep my sense of humor sometimes
Good for you for hiring some help! :P

_________________
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 May 02, 2014 5:17 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 86
Location: Hawaii
Post Re: I find it difficult to keep my sense of humor sometimes
Elizabeth, what a very difficult and unexpected situation you're in now with your husband. I can't imagine being with a partner with severe cognitive problems. At least, with my mother with LBD, I could tell myself that she took care of me when I was helpless, so now I have to be the parent. But to be a parent to a partner is completely different. It does seem unfair.

I agree with mockturtle that it's a good idea to hire help. You can't do it alone, and you don't want to get burned out.

I hear a lot of anger in your post. Who wouldn't be angry thrust into this unlikely position, especially so early in your marriage? I can remember being angry, when my mother first started needing my help. I was already angry from feeling like our roles had reversed a long time ago, due to her long-standing depression and other psychiatric problems. But the latest helplessness drove me into outright anger.

I think part of my anger was from a, perhaps unconscious, realization that each one of us is only a bad-car-accident or serious-disease-diagnosis away from being disabled. How quickly things can change and, in this case, irreversibly. I read recently that 1/3 of adults can expect to be disabled at some point in their lifetime (although not necessarily permanently). That's a sobering thought.

Getting caregiver help, educating yourself on LBD and trying not to take things personally will go a long way to helping you on this ardurous journey. If you and your husband's circumstances were reversed, you would want at least that from him.

Men with LBD, probably more than women, have a harder time realizing that they now have to depend on someone else for, eventually -- everything! It goes against their vision of manhood :being independent, the protector, the breadwinner, etc. That might account for your husband's anger.

My heart goes out to you and your husband. I wish you strength and courage! Let us know how you're doing.

_________________
AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Mon May 05, 2014 2:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: I find it difficult to keep my sense of humor sometimes
It is quite different having a spouse with LBD. Your closest friend, confidant, lover and comforter is no longer there for you but is, instead, replaced with an hostile, often mean, uncaring tyrant with delusions and hallucinations. It's easy to feel resentful but getting someone to help out, give you a few hours to yourself can go far in easing the tension. BTDT! God bless!

_________________
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.


Mon May 05, 2014 2:44 pm
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Joined: Sun Nov 10, 2013 9:25 pm
Posts: 3
Post Re: I find it difficult to keep my sense of humor sometimes
Yes, yes, yes, get a caregiver! My 56 y.o. husband of 30 years now has rapid progression LBD. We have our kids at home. If I didn't work, I would go bonkers! Coming home to someone who is (usually) nothing like the person I married is very difficult. Dealing with the physical and cognitive fluctuations is mind bending. My solution is to put as much support in place as I can tolerate, so that I can support my husband, the father of our children, and keep my own sanity. My kids don't need to lose both parents - one to rapid progression dementia and the other to sorrow, grief and misery. And you don't need to lose your mind, health, and sanity, as well as your husband. Take care.


Tue May 06, 2014 9:10 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 275
Post Re: I find it difficult to keep my sense of humor sometimes
You don't need to loose your mind, health and sanity as well as your LO! Get as much support in place to help you through this as you can. Very well said Victoria!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon May 12, 2014 12:39 am
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