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 Clingy husband 
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Clingy husband
We are relatively new to Lewy. Just got dx'd between Oct - Jan. We only recently reached the point of needing to have a companion from 10 - 2 if I am working, so he is not alone longer than 1-2 hours.
The worst part is he is only happy with me. He is happiest if I lay down with him in the afternoons and sit and read to him at night. Some of this is fine. Don't get me wrong, I enjoy spending time with him. He has been my bestfriend and love for 20+ years. However, I'm getting to the point that I do nothing else but lay or sit with him. Consequently my housework is suffering, I rarely make it to the gym. I work part-time as an RN OR-superviser, we have a 16 year old daughter, I take care of-as much as a 16 year old requires(she is a true gem!), and I care for my hubby and the house. He is significantly oldr than I. Anyway, I want to be with him while he is as well as he is, and I feel really guilty when I'm not. He actually seems more oriented when I just stay by his side all day. But I know that's not realistic for the longterm...Any suggestions???????


Wed Jun 09, 2010 11:21 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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It's lovely that he is happiest sharing intimate moments with you. Perhaps you can choose a helper who has some of the qualities he appreciates in you, someone who will read to him and perhaps do some physical exercises that he enjoys so that he can enjoy their time together. I've been lucky to have had such a helper for the past 2 years, and he and my husband have shared an interest in looking for plants and flowers around the neighborhood, in reading the paper together, and listening to books on tape. I know it's difficult to find such dedicated helpers, but perhaps you should ask around for one.

Doris

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Bay Area, CA


Thu Jun 10, 2010 1:02 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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I do a lot more sitting these days than I like. It's very difficult because I not only do all the work Frank used to do but also take care of all his needs, just as you all do. Frank doesn't talk much because of the drooling, if he tries to talk it's a waterfall. I get so frustrated when I ask him something and he doesn't answer. Most of the time shaking his head would answer me but he just looks into space. If he does answer it's usually "I don't know", even if I ask if he needs to go to the bathroom before we're going out. We've been married 48 years and I love him but find it almost impossible to switch from the caregiver to a loving wife for those intimate moments.


Thu Jun 10, 2010 6:39 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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I hear you! It's a challenge. Regarding the gym, I do fit in an exercise program every day at home with DVDs while my husband is napping. If he doesn't nap, I have to skip it. I also do an exercise bike 5 miles twice a day. Often, I am interrupted but it's better than nothing.

There is something about Lewy, I think, that makes them very 'needy', rather like a toddler. While it can produce some wonderfully sweet moments, it can be very wearing. My LO doesn't think I should be doing anything that does not benefit him directly. If I get a phone call, he constantly interrupts and makes signs for me to hang up. He gets very angry if I am on the phone for more than a minute or two.

I have a male caregiver two mornings a week and sometimes I do things here at home while the cg keeps my husband occupied. It's so nice to be off the hook for a few minutes and get some things done. At $18/hr it's an expensive freedom but well worth it to me.

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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.


Thu Jun 10, 2010 9:27 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
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Sandi - you really do need to spend at least a little time taking care of you. It's a real balancing act, and as women, we tend to feel guilty about everything, especially putting our own needs ahead of our LOs. But, if you don't spend a little time taking care of you, you will get resentful and angry, exhausted and frustrated. You do have a child at home needs you too - at 16, you know she'll be gone in a few years and you don't want to miss out on any of her growing up while she's still there.
When I visit my dad at his ALF he doesn't want to do anything, like have me take him for a walk in his wheelchair most of the time. If I try to have a conversation with him, sometimes it's ok, but usually he gets mad and yells at me because I haven't been able to guess what he is trying to say, or because he accuses me of "interrogating" him if I ask a question. So, he just wants me to sit there, but then yells at me if I sit on his bed or move the one available chair so I can face him. I have so much to take care of when I go to MD that I feel like I can't just sit endlessly for hours when there is the house and business matters to take care of in the days before I go back home (500 mi.) So, I empathize with the balancing act you are trying to do. I often just have to say "I have to go take care of some things for you" and leave, and of course I feel guilty but then I AM taking care of other things for him. Always a balancing act, never a perfect solution! Lynn


Thu Jun 10, 2010 10:57 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Thanks for all the input...it really means a lot. I'm really starting to feel alone. I do have a caregiver ( 2 different men). They are wonderful and my husband enjoys their company. Unfortunately I have them come when I am working mostly. I am off today ,and the caregiver is here- it has been quite an unusual treat. But since I'm here, my husband keeps coming to me saying "will you be here the rest of the day? I really need to talk to you" Frequently, He never knows what he wants to talk about just wants me there. I guess I'm just going to face up to having a caregiver more often, so I can benefit as well.
I am really just at my wits end and losing patience. If I just lay down with him for an entire day, it's so much easier, but then nothing gets done...
When I try to get thing done... I do feel anger and resentment and then I feel guilty.
I am also guilty of thinking that he converses more normally than he really does. Our daughter says I am in deep denial that he is a lot worse than I say or think.
I guess I feel like if he's up and around taking care of his own activities of daily living...then he's really not that bad. Yet I know he hallucinates and covers but his covering ability is lessening. ANd he can't understand the simpliest of directions very often.
I'm sorry I'm rambling... I'm just really lost and friends try to understand but it is truly not understandeable until you live it!!! :cry:


Thu Jun 10, 2010 1:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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In the evenings, especially, my husband will come to me and tell me that we need to discuss some issue. Like yours, he is unable to clearly identify it but somehow expects me to know what he is talking about. It is ironic because in all the pre-LBD years of our marriage, he rarely initiated a conversation with me.

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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.


Thu Jun 10, 2010 1:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
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Sandi - that is the great thing about this forum and the LBD chat - you have a whole host of friends here who really DO understand what you are going through. And you can vent and say whatever you need to say, to get it out with people who are in the same place, or have been there in the past.
If he can do any ADLs right now, that's great, because when they get to the point where they can do less and less, like get dressed, feed themselves, take themselves to the bathroom, give themselves a shower, walk, stand, sit themselves down, etc. it is really tough. At that point you will probably need a lot of help with many of the activities, so keep your fingers crossed that he'll maintain some of those ADLs for quite a while longer.
I had to make a decision last Christmas to spend the holiday here with my own family, and go see my dad a few days later. I figured with a 20 yr. old, he won't be around forever and I wanted to have one more Christmas here with some normalcy. Of course I felt some guilt, but I had to balance my dad's needs with mine, my husband's and one of my son's needs. That is a constant in our lives, especially mine, since I am always doing the juggling thing. I feel guilty no matter what I choices I make because I cannot please everyone at the same time. Oh well, I need to get over it!
At least I am going to exerice class and trying to be a healthier me. Lynn


Thu Jun 10, 2010 4:33 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Thanks to everyone!! This forum has been a great find for me :)
Pat I go through the we need to discuss issues probably 3-4 times a week sometimes more. It gets very frustrating and I become embarrasingly annoyed with the whole process. But I honestly think in his mind he is trying to seriously contribute to the family. He is still very protective of me and worries about what "he is putting me through" Which only makes me feel worse when I become impatient and annoyed! He was always very open and talkative. I guess that's what makes it so hard...I'm still trying to talk to my best friend but he doesn't always understand or make sense :cry:

I do feel like such a whiner. I mean I look at everyone else who all appear so stoic and together and "just thankful for the time we have" and here I get angry and I'm not even the one sick, and all he wants is my company... but I can only sit by his side for so long... :cry:


Thu Jun 10, 2010 10:02 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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Your hubby sounds like mine used to be. Always coming in wherever I was aking when I can sit with him or take a nap with him. I would tell him I need to do this for 1/2 hour more or 1 hour more and then we'll sit and watch a show or nap. I did that many times throughout the day or I would try to do something I thought was fun or pleasant to make his life more bearable. I still do try that but am finding less things he enjoys. Now he doesn't communicate hardly at all and will get up and down and up and down so we can't do that. I have a caregiver for when I work and a few extra hours which are my saving grace. Sometimes I come in here and shut the door while the cg is here and distracts him.
We are not all "stoic". If you could've seen me tonight you would've taken ME away instead of him. I probably would've been happy to go too! It's is so maddening and frustrating and sad and guilt ridden. I try to tell myself this is one of the reasons I've been put on earth is to help this wonderful man I married (big age gap in us too) and that it will all be over if I can just get thru the day. I try to read a lot of Bible especially the book of psalms, they are very soothing as well as my caregiving books, fun things and things that make me laugh! Fortunately I can take him to the gym with me as he'll sit an hour and watch me work out. It's a small gym so he can see me at all times. I hope some of this helps. Just get thru the day, the next hour and soon morning will come soon enough giving us a little rest (unless you have to get up 6-8 times for pee breaks). Take care, hugs to you. You will get thru!


Fri Jun 11, 2010 1:45 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Sandilee,
I am glad you are finding the forums helpful and a place of comfort, you asked for suggestion as to your husband wanting to be with you!

I also dealth with this same type of situation , even when I hired outside caregiving help he still wanted to be with me and see me at all times and I also felt like the world was crumbling around me with my other resposiblities. I ended up hiring someone to clean for me once a week and then I did my best to keep up and I also learned when someone offered their help I wouldn't say Oh thank you I will let you know, I jumped right on the offer and had a job waiting, for me in that last yr I am so thankful I made those choices as it allowed me the time we needed together, I blinked and he was gone and now I have all the time to do the things that seemed so very imporrtant to me and to be honest with you they aren't anymore!

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Irene Selak


Fri Jun 11, 2010 8:26 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Such a good point, Irene.

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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 Jun 11, 2010 8:32 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Another thing, Sandilee. Don't be afraid to come here just to vent a little. Or a lot. After all, we can't very well express our irritation and frustrations to our LO, can we? Who else could possibly understand? Looking retrospectively, these irritations may seem small and insignificant, but in the midst of the battle, sleep-deprived and exhausted, they can loom very large, indeed.

You might also consider the LBD Caring Spouses Forum, just for those of us married to Lewys in addition to this terrific forum.

_________________
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 Jun 11, 2010 9:06 am
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Joined: Fri Jun 19, 2009 11:23 am
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I just can't get over how much our lives are alike. Even though things have improved about 98% since my LO in on Aricept, Namenda, Seroquel, he is still clingy. Some days he will sit and read the paper while I get on the computer and some days he comes in by the computer to be with me. I put down a favorite chair of his so he can sit by me. If I have sandles on, he puts his sandles on. If I take my glasses off, he takes his off. More times than not, he will need to be with me. Some days I feel like I am smothering but then I read my journal from last year this time and know how blessed I am to have this improvement. I know it isn't forever. At times it feels like the maturity of an 18 month old.

Last week we saw his GP and the doc said he has never seen anyone improve this much with this diagnosis. Of course LO is good with show and tell, like so many of the others here. I think some people wonder who is the demented one, him or me.
Mary


Fri Jun 11, 2010 1:09 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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It is truly the strangest thing! He wants to be with me and if I put him off and say I will in X min or when this is done... that's when his uncanny memory kicks in and he's right there telling me it's time for him.

I don't know what I expect with the whole dementia thing... but his memory is actually quite good. It's the sequencing of events,problem solving, feeling insecure, hallucinations,delusions,visual problems,balance and motor issues. But I can be tricked into denial because he can follow my daughter and my conversations MOST of the time. But ask him to take the dog out and there is always a "malfunction" of the leash or the crate. He's beginning to have trouble with his cell phone-wants a new one.

He's been dx'd as moderate to severe dementia, and I am getting to where i'm afraid to leave him for more than a couple of hours because he gets insecure and wants me with him.
I'm not complaining but I guess I just thought of dementia as more debilitating. These are symptoms I can't comfort or fix I guess is my problem.... but I guess no symptom is, I don't know. I'm still processing ...


Fri Jun 11, 2010 8:19 pm
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