Here's the deal:

My mom's on a quiet downward spiral. It's to be expected. The heat this summer is really whacking her out mentally and physically. In short, she now needs to be supervised ALL THE TIME, or else she'll start destroying stuff.

My husband, as some of you know, is her primary caregiver. He gave up working FT to care for her. Now that she's in day care 4 days/week, he can take the occasional client. He's at the end of his rope in looking after her, especially between the time when she leaves day care and I return from work.

Me? I'm the breadwinner. I work a physically demanding job that leaves me drained to the extent that I can't deal with ANYTHING once I get home.

The issue? The Blame Game, of course. Maybe my expectations are too high, although I don't think so -- is it wrong to ask/expect that some housecleaning be done while I'm at work? Is it wrong to ask/expect to have a bit of "me" time once I come home? Is it wrong to ask/expect that somebody please walk the dogs while I'm gone?

The flip side? I realize that I'm really my husband's only constant link to the outside world. I liken it to being a SAHM (stay at home mom), so desperate for adult conversation, etc., that she's all over her husband the minute he comes through the door. The difference? We don't have adult conversations because <i>every single *#&@%!% thing revolves around Mom</i>.

No, we don't have any other help other than day care. Mom doesn't need medical care as much as she needs supervision/companionship. I've hit a huge snafu re getting my dad's service record for the Veterans' Aid and Attendance, so I'm not expecting anything from that until early next year.

We're both at the end of our ropes. I'm surprised we haven't killed each other yet.

So...if you ever went down this road, how did you handle it? I can't even think straight anymore.

quote:

Originally posted by embersmom:


Whoa -- I almost forgot I'd started this thread! Caregiver dementia, anyone?

LMAO! Good ta see ya EM! Glad to hear that things are finally calming down and you cleared the air! As for the questions fire away!
I am sorry about your arm hope you feel better soon!

quote:

Originally posted by Moms_Buddy:
Hey, embersmom - how're things goin'? Haven't heard from you in a while... I hope things are going better for all of you. You seemed to be feelin' kinda on your last nerve before - I hope that you have found some peace and renewal! When you get a moment, I hope you'll fill us in on what's been happening in your neck of the woods.

Whoa -- I almost forgot I'd started this thread! Caregiver dementia, anyone?

Things between hubby and I have calmed down somewhat. It's ironic -- we veer between being at each other's throats and being quite complacent with each other. I think it's a combination of our personalities coupled with caregiving. Anyway, after I'd originally posted this thread, hubby and I had several long talks, from Mom herself to the house to how caring for her has affected both of us. Unfortunately, nothing's come of it, but it was wonderful to finally get everything off my chest!

Now I've got a whole new set of questions I'm going to be dropping into different places. One thing I've noticed is that the more Mom advances, the more exhausted we are. I'm also fighting an arm injury which has left me partially incapacitated. If it isn't one thing, it's another...*wry grin*

Schatzie first of all welcome in. Im sorry for what your entire family is going through especially your mom. What a great daughter you are to have shared the responsibility of this task with your sister. How she feels is typical of most patients in the throws of a disease like this. Is this her only ailment? The one thing I have to say here is that the constant moving every 6 months can be really hard on her...As our LO's get older they like more stability in their lives and moves like this can upset the balance of things. Altitude can do a number here also on our LO's body and metabolism its just not a good idea to be moving her like this all the time whether she wants this or not. Talk to her PCP and see how he feels about this and if he has some words of wisdom to pass on to your sister here to get her on board with you about a NH. Obviously she is not listening to you so maybe a doctor will make the difference

Hi I've never posted any kind of letter in a forum but I am at my wits end. My mother lives with me for 6 months out of every year and with my sister the other six months. She has parkinsons and is completely unable to care for herself at all anymore. That includes night time potty duty and when the sitter leaves after I arrive home after a ten hour workday she is constantly wanting my attention along with my 16 year old son and my husband. My weekends are spent here at home without being able to leave because of lack of anyone to be around for potty duty and my mother acts like a small child that is scared to be left alone at all. It depresses me and my husband as well. He hates to see me completely consumed with the very large demands my mother puts on me. Five years of this is coming up soon and I feel totally as if a nursing home should be the answer. The problem is my sister won't go for it because during short stints of rehab my mother complains so much about the care at nursing facilities. I really don't think my son and husband should be paying the price for my mom having parkinsons. Nor do I feel as if my life should be totally taken over by my mother.I also feel that mom is far from being the most thankful or thoughtful for what's going on in my life or what I have to do as a parent to a son who plays many sports and would love to do some vacationing with his parents but, can not because there is not enough money to always pay sisters and if we do pay she gets upset that we are spending her money. Can you give me any suggestions as how to convince my sister that we are not deserting her just because she is. in a nh.
My mom is always here in the summer because i live in nc and my sister lives in fl. and she likes to be where the weather is best . For some reason I have a hard time just saying no to her. She was always such a stern and tough mother and we were taught what she says goes and here at 46 years of age I still can't break that.Anyone else ever feel like that? Thanks for listening and any suggestions would be helpful or maybe just knowing I am not alone in the feelings I have about all this. Thanks!

Hey, embersmom - how're things goin'? Haven't heard from you in a while... I hope things are going better for all of you. You seemed to be feelin' kinda on your last nerve before - I hope that you have found some peace and renewal! When you get a moment, I hope you'll fill us in on what's been happening in your neck of the woods.

EM, I can resonate to your feelings. We've been going through a very difficult time with our relationship since my dad came down here. Although I never had kids, it seems to me like it's very similar to the stage in family life where you have toddlers. So much of the focus is on caregiving and not on the marital relationship. I've caught myself going on and on about my dad's caregiving while out to dinner with my husband -- he gets this blank stare on his face. I realize I've got to make more time for our relationship and stop "talking shop". I now try to vent on here and with close female friends who are going through eldercare issues.

My husband deals with the situation with my dad by staying away from the home. He leaves early in the morning and comes home after my dad is in bed and he does this seven days a week. I could get really upset about this, but instead I try to figure out ways to make the time we have together enjoyable so he will WANT to come home. My husband doesn't do one thing around the house, because he's never here. We make our choices about how to handle these things. Not everyone would agree with the way I handle my situation with my husband, but I feel I'd rather preserve the good feelings in our relationship than try to make things fair, because in the end, my parents will be gone and after they go, what will be left except my relationship with my husband. I'm looking at this situation from a big picture perspective. If I looked at it from a day-to-day perspective and just from my point of view, I'd be depressed or upset or angry most of the time.

Blame kills a relationship quicker than just about anything. Just seeing the other person's face or hearing their voice begins to trigger a defensive mode so that you are just waiting for the next negative look or remark.

I have to say that when I see my husband, I feel a sense of joy and the last thing I think about is what he did wrong. I want that feeling to last. It's the best part of my life.

I hope you and your husband find a way through this. You've got a lot more pressures on your lives than my husband and I have, so I truly empathize with your situation and wish you the best.

Hmmmmm! Now theres an idea!!! Im mean really if ya cant bend over bedfast or any udder ailment that prevents ya why the heck not?! Hey Big Mama would pain in the neck be sufficient ya think?!

...wonder if Medicare would pay for an industrial quality Roomba...

Hee hee Ill send over Dusty to ya ta chase those dang dust bunnies away! Check dat one off da list!

quote:

MB ya still have that 12g?! Shoot me will ya!

Sorry, only got one shell left, BG, and I'm savin' that one in case I don't get this place cleaned up enough for the company comin' to visit this weekend!

Ya know EM dont pay attention to the "perfect" people they are not always as happy go lucky as they seem Behind closed doors and all ya know what I mean! Ok so in the spirit of cleanliness being next to...well ya know... I cleaned the entire house and finished the laundry! (OMG!)the dust bunnies are tucked safetly away under the couch (someone tell me the purpose of dust bunnies!) and fixed dinner for the hunny... Now I feel like Martha freakin Stewart!
MB ya still have that 12g?! Shoot me will ya!
Thanks for the motivation EM! lol! Have a great nite!

This message has been edited. Last edited by: Bunnys_grl,

Sweetie, you are having a bad time and ALL the feelings - the anger, the jealousy, the desperation - all and more are part of it. No matter how things play out, you and your husband have gone through an extraordinary experience together at an earlier age than most. You are learning lessons that it takes some folks a lifetime to learn (then they get AD and forget all the lessons... ).

I don't think you are a spoiled brat any more than I think that of myself when I have a "MEMEMEMEME" fit!!

I think ALL of us have feelings of just wanting things to be nice and normal again, whatever that is for us. That includes a neat, organized house where the tumbleweeds hide far under the sofa where they belong; where the kitchen is clean and neat any time of the day someone wants to pop in and make a snack; where it's permissible to come home after a hard day and pass out for a couple of guilt-free hours with our good shoes still on; where you can have a few friends over for dinner and a game of cards; where there's time to go for a leisurely after-dinner walk with the dogs and the sunset...

I could go on and on...

Hang in there! The jealousy I understand so well! When I returned to fulltime work after a layoff of a year or so, I MOURNED my home life. I mourned my dog who was still a pup. I mourned not having time to putter and fuss over the little things that matter to me. Now I have a house full of people - adult kids an elderly mom and I MISS my private life! I miss being able to put something somewhere and unless I or my husband move it, it'll be there till the cows come home (or the cats knock it off).

We WILL have things the way we want them again one day - not sure when, but we will. You and your husband have a lot of living to do ahead of y'all!! In the meantime, try to grab a few moments each day together - sit outside and talk (or sweat, if you live in the gulf south), share a glass of wine for 10 minutes or as long as you get... Keep da faith, baby!!

*sigh*

All of you have given me a lot to think about.

I don't mean to sound ungrateful because I'm not -- yes, I KNOW hubby's caring for Mom is a lot more important than doggie tumbleweeds floating on the kitchen floor or dishes in the sink. I KNOW he's doing the best he can. He knows I know; a day doesn't go by when I tell him in some way that I REALIZE his job is a lot more difficult than mine in a lot of ways, and, in hindsight, he's a lot better emotionally equipped to handle it than I am because she's not his mother.

In some ways I'm jealous. I'm jealous because, on the whole, his relationship with her is a lot better than mine ever was. I'm jealous because when she's at day care, he can indulge himself with naps and hobbies if he so chooses. I'm jealous because, just by the fact that he's at home, it's slowly becoming HIS house, not mine nor my mothers (I mean in the day-to-day running, nothing legal). BUT...I know this sounds ironic...if we were to trade places, I'd be a screaming banshee by now.

I know I must sound like the 12-year old spoiled brat I was Has anyone ever found themselves regressing the more the caregiving accelerates?

Mom's Buddy, I'm sort of put off by the SAHM acronym too, but it was only thing I could think of at the time I first posted. It's funny...all my SILs are SAHMs, and I honestly don't know how they do it AND keep their houses looking like the cover of "Better Homes And Gardens". Maybe they ditch all the toys in a hidden closet I try not to compare myself to them, but it's difficult when it's offhandedly mentioned that YOU are the only one who hasn't hosted a family get-together, and if we can get our crap together, why can't you? Um...I wonder what'll happen to their oh-so-perfect fairy tale lives when, god forbid, something happens to either my MIL or FIL? (yes, I'm being snarky).

Heh, hubby just asked me why I'm typing so furiously. I told him the gist of this post. He just looked at me and said, "Oh, that. Didn't I tell you it comes with the territory?"

hello Embersmom,

Its ok to feel frustrated goes with the territory. When I started caring for mom I was working and my sister would come over to help and I have my son and hubby to help me but still it never seemed like there was enough time in the day to get everything done. Then I had to stay home full time to care for mom and still had my son and hubby to help me but there was still no time left. Careing for mom is easier now that I have a system and have learned a lot of tricks of the trade. But vacum, dust, dishes ,laundry, sleep with my hubby and feel sexy doing it is alot to ask. Its as much as i can to care for her needs and shower myself some days. But I realized that I was in trouble with my new anti social life and commited to change.

First the house wont fall down if its not clean and if i run out of clean dishes i can use plastic. Laundry i have done loads of it only to lose steam when it came time to fold it, oh well it waited for me to come around and nothing bad happened. If company is coming i clean like crazy otherwise a little dust (ok sometimes a lot of dust) wont kill me.

Second I found a woman through a friend that was a nurse but was doing the SAHM thing and so i asked it she would sit with mom for 4 hrs a week , she didnt need to do anything but sit, watch tv, read whatever but just be there for some money that wasn't as much as an agency would charge the only thing was she had to ignore mom's verbal abuse and rants. She agreeded and it was great. Mom was nice at first but then let it all hang out and this nice soul just took it.She said it was extra spending money for the family and she know it wasnt personel. Me and hubby went out to eat and food shopping and stuff it was great, then she went back to work, but i learned to take me time.

My sister had a friend who was laid off so she had her come over to mom's once a week for some extra cash and do a little cleaning for me. There were times i was right in the room with her while she was doing it and you know what, I felt ok with it. She needed the cash and i need the help and company, she used to tell me about her on and off again 8 yr. relationship. It wasn't a lot of money but it helped us both. She did get a new job and that was a good thing for her. Me if i need to do that in the furture I will with no guilt.

Third my husband sometimes felt unloved. So I make it a point no matter what to tell him I love Him and that he is cute and sexy and what ever else comes to mind every, every, every day. So what if I look a wreck or the the house is a mess I say it with all my heart and then question him to death about his job so I can live it through him, and some days he listens to me about mom because lets face it she is my life. He comes home and sometimes looks at me like what did i do today and i say nothing and he sighs and folds the laundy or runs to the store. Now I am home but still dinner is tunafish sandwich or soup and he understands. And i love sleeping with him i just have to make myself shower and primp and know mom is safe in bed for a couple hours a night every now and then. We sometimes just snuggle and talk about stupid stuff like winning the lottery and the things we would do, but we dont play the lottery that could be a problem. Oh and its okay to tell hubby your feelings its better to share them then, hold them in and sometimes it okay to say just give me a minute, leave me alone I'm not feeling very social right now as long as you dont clam up and blame him or yourself for a blameless situation.

Fourth is hard to deal with but it is what it is, and that is this time is only temporary and that there will be time for you and hubby later. Know this ,except this and it will somedays get you through the night. Unlike a SAHM who knows the joy of seeing her child grow and learn to become an independent person a caregiver sees it as declines and setbacks and watching a love one become more dependent and that is so very hard to deal with. But know that it is done from love and like all things in life what goes round comes round and love given will be love gained. So kiss mom and hubby and hang in there and don't sweat the small and really not important stuff, just close the bathroom door turn on the shower have a good cry or yell or sing really loud and badly for a good 20 minutes every now and then and feel better. Bye.

Moms buddy is right you do have one rare and great man in your husband, you are very lucky and I hope that you can understand that and show him the love and respect he deserves as a caregiver of your mom.

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is it wrong to ask/expect that some housecleaning be done while I'm at work? Is it wrong to ask/expect to have a bit of "me" time once I come home? Is it wrong to ask/expect that somebody please walk the dogs while I'm gone?

What about your husband? Is he not entitled to the same things? He takes care of YOUR MOM! You are a competant adult and can not only take care of yourself, you can help take care of others as well.

24/7 caregiving is a TOUGH row to hoe. It means just what you have stated: caring for someone else's needs (often) before your own. Rearing kids is the same way. How many days of interruption after interruption, handling mini to major crises, phone calls, the dog needs out, the washer runs over, oh hell I forgot about the dog, gotta get to an appointment on time, trip over the vacuum cleaner I took out and MEANT to run before something crashed in Mom's room and I rant to see... etc. etc. It is a rat race soooo beyond what people experience in their jobs!! And it doesn't STOP at 5:30!!! I have managed companies that I NEVER worked as hard while employed there as I do as a caregiver!

Your husband is a RARE MAN!!! The chores and responsibilities he DOES are huge. Take off 2 weeks and stay at home by yourself and let him go out to work and come home aggravated that the house is not tidy! Before Mom lived here, I worked fulltime and came home and cleaned and did chores and cooked and did laundry and took care of kids and pets and the yard until it was time to go to bed and get up and do it all over again.

There is no shame in NOT being able to handle being a caregiver and the difficulties it brings to one's life. If this is going to rob you of every bit of enjoyment in life, cause you to become alienated from your husband, it's time to place Mom and get your life back on track.

But if you really really WANT to care for her, you have to work together with your husband and support HIM in his endeavors!

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I liken it to being a SAHM (stay at home mom), so desperate for adult conversation, etc., that she's all over her husband the minute he comes through the door.

Somehow the idea that there's an anacronym for a "stay at home mom" makes me wanna puke. Why isn't there one for a "Go To Work Mom" (GTWM)? Perhaps there was no intention, but it sounds disrespectful and ignorant of the JOB that women do for their families. Please give equal air time to the fully-grown partners who are so desperate for attention, that they come home and become petulent because "mommy' is not paying enough attention to them... Everyone has needs. If you want yours respected, be sure to show respect for the needs of others.

When I catch myself in the throes of the "blame game," I immediately hit "reverse engines" and switch my focus to examining my OWN self and my contributions/deficits rather than focusing on someone else's. I can't DO anything about what others do or don't do: I CAN do something about holding my OWN nose to the grindstone and paying attention to what I am bringing to the equation. Somehow, in that process, I see places where I can help them, where I can do better, which in turn, helps me.

Everyone has their idiosyncracies; everyone gets aggravated at the people they live with; everyone gets fed up with the rat race of their life. You are a very fortunate woman to have a partner who is willing to do so much for you... many folks are working a job, caring for their mom like yours (or worse...) and coming home to tend her all night ALONE.

EM you may hate this but I feel sometimes like not doing anything here...cleaning ect. Caregiving is such a drain that sometimes it takes all of whats left to just throw a load of laundry in...Hunny gets home and I feel guilty if I dont do these basic things cause I know he has a standard to keeping things clean but at the end he assures me that sometimes there are bad days and outside of cg nothing else can be done (ok so thats on his good days! ) sometimes it is too much to expect things to get done because other more important things happen....poop happens. And the worse she gets the less time you have for those trivial things...(yea I know! Not so trivial if you like things clean) But you get what I am saying.
Just cause he stays home and you work outside doesnt mean his job is any less stressful... this is your mom. Imagine for a moment cause here is where it gets a little sticky (this is how I feel) Your hubby is caring for your mom and hes doing the best he can, if he does something that compromises her care (unknowing) can you imagine the guilt he would be feeling? He has an awful lot on his plate, I know the feeling. Let these feelings go, dont do the blame game it not going to do you any good. Are some of these arguments starting with this is your mom and you should be caring for her? Get some outside help for him before he blows that proverbial gasket on you EM. The health of your marriage might get a little boost here if you do. There is alot of emotions going on and you need to let it all go. Decompress the situation quickly for everyones sake.
I know sometimes I lose sight of whats important so I go back to the beginning and let everything else go. Tomorrows a new day start there and tell hubby all about it and while your at it praise him on the lovely job he has done so far with your mom and everything else, even if its not up to snuff And give yourself a big hug because this cant be easy for you either sweetie...this is your mom here