The Caregiver... How are YOU doing today?

Hey girls.....ASG made the first milestone at 60...she gets COW TIME...woohoo!!!!!!
And the first one to hit 100 gets a cow patty from Nobs Busey! We're a classy bunch....:)

The changing behaviors are fascinating to me. Tonight when I was putting the col to bed she was wandering around looking for her flashlight in case the power went out. That was a first. And she also told me she had no desire to drive a car....that one threw me because she is always telling us how capable she is and can drive anywhere she wants. I will have to keep her occupied tomorrow or she will be right in the middle of the yard work trying to help. I'll just tell her she needs to stay inside and guard her purse and makeup....that will keep her occupied for a while.

Time for bed.....lights out!

Love and Hugz,
Jam

Its nearly 12:30am and Mom is wide awake. We need to be at the hospital by 5:30am. I gave her a the Hibicleanse (sp?) bath tonight. She complained the whole time about this and that. She also accused me of wishing her dead. I know she's freaked out because she's about to undergo yet another surgery, but my patience snapped and I told her to shut the f_ _ k up!

My bad...

It is almost 4:30 in the morning and I am not sleeping as you can see. I am probably not alone since it seems there are so many of us dealing with similar problems. I don't get much sleep because my mom calls me several times a night to help her get to bathroom. She uses a walker but is not supposed to walk unassisted due to several falls in past 3-4 yrs. My dad died June 2008 and she came to live with me and my husband then as she was not able to live alone. My husband was my total support caring for my mom, both physically and mentally, he kept me going. Well, my husband came down with a very rare bone marrow disease, had 2 bone marrow transplants and then I lost him just 9 mnths ago. Life is so difficult w/o him. I miss him terribly, am trying to deal with my grieving, but caring for my mom is just draining me physically and mentally. She was a wonderful mom when she was younger and more able, but she is not always pleasant now, she can say very hurtful things, etc. and like some of you mention I hear the same thing over and over each day, her opinions on everything, she defends her younger daughter who is 50 yrs old but who lives in another state,(only 150 miles away) and this daughter has not lifted a finger in any way since our dad died. I give my mom excellent care, she is kept clean, well fed, taken to all dr appts, I am not supposed to leave her home by herself b/c of the falling history. It is getting harder to get her out into wheelchair and car if I need to go anywhere. But mom expects me to take her everywhere, does not want me to go out with my children or friens, she wants my undivided attn 100 % of the time. Like some of you, I get annoyed and at times resent her demands, then I feel guilty, it is just such an unsatisfying job! I am a nurse and work 1-2 nights a week and I have a sitter for her those nights who is absolutely wonderful. But I would like to be outside on my deck, or in the yard planting a few flowers, talking or visiting with a neighbor, etc but my mom wants to know,"what are you doing out there, you are never inside, it is too hot out there", she will call me from house phone on my cell to tell me she has to go to bathroom, every 30-45 minutes. If I am inside it is strange that she doesn't have to go but maybe every 1-3 hours! My children work and they do come to see their gma but they are not able to be here constantly and she is wondering where they are, what they are doing, she thinks we all have nothing to do but entertain her. She thinks I am not fun because I am washing clothes, cooking for her, cleaning up after her, get no sleep, and she says it is my own fault that I don't get any rest! I am sure a lot of you are nodding your head and saying that is the same thing I am going thru. Well I don't have the answers, we live ok but my mom doesn't have any money to help pay her way, and is unable to get any assistance financially, so I am paying most of our expenses and extra b/c she has a lot of medical needs, adult diapers, etc and she has to pay taxes, ins, utilities on a very modest house which is for sale but in this area, real estate is not selling well, and she owes a fairly lg amt on an equity line which she and my dad used earlier. So again her soc sec. check barely covers her bills. I love my mom dearly but this is such a stressful job and I would like to be able to "breathe" a little on my own but it is not to be for now. I feel guilty b/c if I should lose her I would be sad and would miss her so much, but where is there some moderation in this type of caregiving job. I had helped with my dad when he was sick and had health problems, then my precious husband and "love of my life" became very sick. BUT, my dad nor my husband were hard to care for, they were the joy in my life, they were considerate and thoughtful even tho they were not well. I miss both of them so much and mom on the other hand is 85, and has multiple health problems but is so wrapped up in her self that she doesn't know what this is doing to me. Well, I too have gotten some of my feelings out here, thanks for listening, and we just have to keep on going on, but it is important to try to handle our own stress before it causes us to get sick or down. Well I need to get a couple hrs sleep if I can, got a Dr appt myself infew hours. Have a good Tuesday and try to stop long enough to "smell the roses"! God Bless each of you who are trying so hard for your loved one!

BP, yep sometimes those things just come rolling out of our mouth.. we are tired, can't think straight, and we just get tired of someone trying to tell us how we think and feel. Guess it its better for an occasional F bomb to land than to have us running around in circles in our front yard and making even worse noise...you know, the blubbering and crying and sounding like we know a foreign language.....But I still hear the compassion for her fear. It's almost like we become two people, the one who cares and the one who want to run...You are doing a great job, and if the F bomb is the worst that happens then you are still on top of the game.. let us know how her surgery goes.... in my prayers today, both of you.. hugs across the miles.

tuff, first let me say how sorry I am for the loss of your husband. I can not imagine the load you are carrying. And not being able to grieve without outside demands makes it even harder.. I am just so sad for your situation...
One thing that I noticed about myself was that I am a "compulsive listener", and by that I mean I hear every word, every change in tone of voice, so I spend much of my time in absolute overload..haven't figured out yet why I do that, but I know if I could just tune some of it out, I wouldn't be hurt, defensive, and feeling like I was being possessed by an elder voice....I think as caregivers we train our brain to hear the things that may sound an alarm , for us to know something isn't right, but we also can not filter out the stuff that drive us insane... someone needs to come up with a course for caregivers that help us hear only the important stuff, like,,, hungry, bathroom, poop, drink, help, ect, and not hear the demanding, the selfish, the hurtful things.. And when our heart is broken on top of it all, we are just raw, can't think straight. My heart goes out to you. Know that we HEAR YOU and that you can come here any time day or night and someone will be here for you...I'm sure someone has been awakened for the "potty run" and may check in and see what is going on...
thank you for sharing your story and others will respond and help you carry your load..You are not alone. And sometimes just letting it out helps...
Maybe when you are not so overwhelmed, you can see if there are adult day cares in your area, or other resources available...I am hoping you get a break, some how, some way and soon. Please let us know how things are as I shared with BP, we are here for you, to listen, to let you know you are not alone... We've all been there in some shape, form or fashion. Please keep posting and letting us know how you are.. and again, I am so sorry for the loss of you husband.... hugs and prayers for you today....

Thanks for the shout out ASG!!! No more live in for ladee, only as a last resort. I really like the couple, like the daughter, and it was as if we had known each other for ages.. It, like all jobs, will have it's challenges. Maye their biggest challenge will be getting used to ME. but am very happy about this, feel more secure knowing I have a good salary and can possibly save a dime now..
So happy to see you here ASG, have been missing your posts and hearing how the Auntie is doing... And yes, Alz. patients do like to move furniture... Maybe you will catch on and let HER do it, not like you don't have enough to do already..... hugs to you girl, and did I see you got the Cow Patty... congrats to your OCD, see you won a prize... hugs to you...

Burned.....I looked up Ajo on the map and I see that it is a very small community in AZ. I'm sure your medical options are few. but it does sound like doctors don't know what is wrong with David. First you must have a diagnosis. I see that both Phoenix and Tuscon are each 2 hrs away from you. Are you Native American? or David? Can you get tribal help? I looked at the listing on the Chamber of Commerce website and saw it was very limited. Is there a Ajo government site to look at for Social Services? Pima County?

Please keep in touch. You need us and we can't forget about you. Keeping you in my prayers...........

tuff......my heart goes out to you and the responsibilities you now have to shoulder yourself, I know, seem so heavy to carry. I am sorry for the loss of your Dad and then your husband, especially so close together. And then to be a care giver as your career! Everyone expects us to be the "pillar" but sometimes we just can't go any further. Your mother sounds like my mil. She thinks she has to go everywhere we go and it just isn't possible anymore. She is starting to get unsteady on her feet but can still be left alone. Watching her walk through a grocery store is just an exercise in frustration. In her mind, she is just as capable of doing anything now that she could 50 yrs ago and telling her she cannot because "you might harm yourself" etc is a little like whistling in the wind. We are also expected to entertain her during the day. Her daughter passed away in 2008 and before she got too ill, she and her husband would pick up mil and take her shopping and out to eat, so mil can get really angry with us because we don't do the same thing. I have to laugh because their names were John and Marsha.....what is this a soap opera? And she will still sing the praises of her daughter and truth to tell, she wasn't a nice person.

Is there a way to sit mom at a window so she can see outside and that would allow you to get some time to yourself but still be within sight of mom? Maybe she would be more comfortable then and you would get some much needed "me time". Have you given some consideration to renting your mother's house instead of selling? That's what we have done with mil's house. We built her an extension onto our house 1 1/2 yrs ago, but she still had the monstrosity that she was living in. It needed a lot of repairs to just get it to a sellable point, so we made a low ball offer for rent, with the understanding that any upkeep was the tenant's responsibility and got someone in almost immediately and she has a little extra income now every month.

As ladeeda says, you are not alone, we're all in this together in one fashion or another, but all with common ground. We will listen anytime you feel the need to unload and let out your frustrations. Come back and visit and let us know how you are.

Love and Hugz,
Jam

bp.....we've all let the F-bomb slip out occasionally. So don't beat yourself up over it.
I hope things go well with mom's surgery. Let us know how it turns out and how you're doing.

Love and Hugz,
Jam

I slept pretty well last night, but I must say I did not answer every call. By this morning mom was so into her dreams, she didn't know my name. She said "Millie" wouldn't asnwer her. OK.. Then I tolds her my name is Sue, so that got me off the hook.

Yesterday morning she woke up from a nap mad as hell. My neighbor's sil, of all people. Haven't seen her since Easter. Mom is convinced I am tired all the time cause I stay up reading my kindle.....I wish. So this poor woman told her I would sleep better if mom didn't keep waking me up all night. Never happened. But mom will let her hold it when she sees her again !!!

Went outside to get my crop of snow peas. No rabbit in sight. Vinegar must be working. Paid real close attention to the bees, letting them do their thing. Reaching over green beans to get to snow peas and a baby rabbit runs out right next to me !!! Did I ever look stupid out there !!! It was hiding in the green beans right by my foot !! Had to go back in and change my drawers. Please don't turn me in to PETA or Humane Society or even SPCA. I only chase them with a stick.....not a shotgun !! And the saga continues.......

Tuff, our old relatives (very often), they are very selfish. When I fall asleep on the couch close to my mother she wakes me up one thousand times to ask me to do something. She does not realize any more how tired I am and how much I need to sleep.
I think you need more spare time for yourself. As you are a nurse, couldn't you think of working more nights out? 1) While you work, you have a social life different from your mother 2) maybe you can save some money to have one day off, every now and then. I work, and my work helps me to have some freedom and sometimes (not very often!) the money to go away 1 or 2 days! It recharges your batteries.

I'm going to try and get out again today in between laundry and that "other thing" I'm doing and get the weeds pulled around the peas. My beans aren't doing so well. I tried to germinate some in peat but when I planted them they have not sprouted whatsoever; the seeds I just stuck in the ground did, so I think I will go put more in the ground....late crop but who cares if they grow and I don't get them until Sept.

Maybe you should "hire" Millie to come and give you a break occasionally....:)

Got ladeeda off to work.....can't wait to hear about her first day.....makes her sound like she's off to her first day of school....:) Time for laundry now.........

Love and Hugz,
Jam

ASG, yes, your OCD partner here....except I count.....hey, it keeps me busy.... want to know how many towels I folded yesterday in one load? I'm your girl. How many dishes I took out of the dishwasher? I KNOW I'm nuts !!! no doubts at all !!HAHAHA

My hubby was in the AF for 23 years, and we always moved a couple of times at each base, so I got good at that moving thing. We moved our entire household in one day when we moved into this house....just the 2 of us. We married in Illinois...he was stationed in Delaware at the time. Lived in 4 different places. Then went to Colorado Spgs, lived in 2 places. Went to Germany for 3 years....
did a little traveling...Venice, Vienna (Where hubby was born), Paris, Athens, French Riviera, waved at Monaco. Transferred to NC, then Phoenix, back to NC where Hubby was in SC and traveled back and forth on weekends. He has been to Vietnam, TDY back there for the pull-out, Korea, Desert Storm in UAE - Dubai - Spain, Turkey, Egypt. We retired in NC because the people are so friendly, and the city and base get along so well together. Never been to another place like it. I have stories of kindnesses that would make you cry. Must get going for now....

Well, Doctor called. Mom has diverticulitis throughout the colon. No surprise, I saw that myself. CVan't find the fistula, OK, I expected that. NO CANCER !! Because of the high risk of deadly sepsis infections in bladder and kidneys, not to mention any other UTI, he wants us to go to a Vaginal Surgeon at Duke Hospital just to see what they have to say and what the options are. And a sattelite hospital is in Raleigh instead of Durham, so that cuts an hour off drive time. His office will make the appt. and Duke will send me forms and directions, so I imagine it will be in a couple of weeks at the EARLIEST. He is concerned also about quality of health if this continues, and mom wants out of Depends, so.......
Thanks for your concern and prayers, I had feared cancer all this time.......

seemeride - im happy to hear she has no cancer . thank you jesus !

I second that !!!!

Now, If I could just get her in the shower today and wash her hair ! I know she would feel so much better, she always says she does, but it is the getting it started that she dreads.

Hey, Got the shower done and sat outside for awhile in the shade on the front porch. She makes it such an ordeal when it needn't be. If I can get her hair done and eyebrow on, I will have accomplished a great feat for one day. Jam, my mom used to take a shower at night, put all her make-up on and then go to bed. That way if she died in the middle of the night, she looked GOOD and her eyebrows were on. Maybe col feels the same way. Now mom is in one of her 50 skirts, 30 of which are various patterns of black and white, and she is feeling good. Amen.

Hey jam woohoo back!!! I love cow time:) Ladeeda, I'm kinda glad to hear your new job won't be live in, but stressful just as well! They are sooooo lucky to have you! Seemer, she is lucky to have you to. Do you find that you gt just as wet as her. Love yuou guys! The new ones too. I will evebtually learn your names and stories.

ASG...I get just as wet and so does the floor. I can never decide if I should wear flip flops or go barefoot, and today I used 2 towels on the floor. Still managed to miss the towels. And heaven forbid I try to rinse her too long....thinks she may melt, I guess. She is feeling weepy and clingy today. I know she hates the mess, but what can you do? It is what it is until we find out something different. The only thing I haven't dropped on her is the F-bomb. I can be mean enough without it. But I do always apologize and hug her and tell her I love her, and it usually happens when she wakes me up from a nap. Today it is about 98, and her window has been open all day to air out the room, and she is sleeping in it now with a sheet on. She went on about how I was spoiled with A/C and what would I do without it. Told her I didn't have it as a kid, and I didn't ride a horse to the store and I don't want to do it now, either. Oops, but it got her off that A/C. It is set on 83 ! I am trying to compromise !!! Just can't win............

It's a beautiful day in the neighborhood....Love my new job, the couple are fun to be around, and I feel like after a week or so, we will all settle in and have our routine. I am sure I will be sharing about "Sonny", this is the gentleman with early stage Alz. He loves to be outside but can not be unattended, so him and I went out today to "pick up limbs" in the yard. They were only little sticks, but he was one busy guy. There is a little pile of dried limbs, ect. where we put the stuff. But I looked up and he had thrown the stuff in the neighbors yard.... Oh Lord, the wife may have had issue with this, but she couldn't see us, Who cares!!!! he cleaned up his yard, that's all that matters...so I am feeling very blessed after the hell I have been thru in the past months...
Seeme, am so grateful your mom does not have cancer.... Prayers answered.. Let us know what else is going to happen.. I know you are tired out from the shower this mornig, have you ever considered just taking a shower WITH her???? Then you'd save some time and mess, just a suggestion... love ya
ASG, Thanks for the compliment, and I really do not feel this will be as stressful as previous jobs, first time I have been anywhere near relaxed in over two years... they are very nice people and I won't have to work 18 hr. days... thanks for your concern.. love ya girl, how are the kids???

And everyone else, I will try to get couaght up later, Hope everything is as well as can be expected and hope all caregivers got a few minutes to themselves today...
hugs to everyone, later..

Good Evening, Everyone...... We went out and picked a crop of veggies from the garden....no rabbits, so I bet them. Had to pull a few vines cause the rabbits broke them. Mom loves to see what e get. Tomorrow I have to lump them all up for her and cook them on the grill...sliced potatoes with skins, summer squash, pea pods, mushrooms, green beans, yellow peppers, topped with butter, chives, pepper, garlic salt....all raw and cooked in tin foil for however long it takes. Really good and easy....unles mom doesn't get enough.

I wanted to stay up until Ladee posted about her first day on the new job, but I am just too tired. I'll have to catch up tomorrow. I cooked 5 meals for mom today. It is so cold in here for her, at 83 degrees, that she wanted hot meals for every meal today. Just too pooped.......night.....zzzzzzzzzzzzz

Ladee, I can rest esasier now that I read about your first day..

ladee.....I am so very happy for you.....what a difference in your charges. I know you miss Ruth and this will make that a little easier. Sent you an email with some info.

I hope everyone else has had a good day. ASG.....are the kids out of school yet? I know my granddaughters are getting very anxious, they don't get out until the 3rd. Too many snow days to make up. Hope things have been quiet around Pomme....I absolutely have to get down there and look over the house so the thing will sell this year......I hope!

seeme......have a good night's rest, I know you are tired.

Love and Hugz,
Jam

Jam, yes, last day was wendsday. They are doing good so far, not to many problems with everyone home together yet. Knock on wood:) its ok down this way. No tornadoes have hit so far. If hubby and I get to go fishing within the next couple of weeks(he's been wanting to) I will drive over by those houses but I haven't heard of any storm damage that way. Is your house right on the river in that lake neighbor hood? Nearby my area?

Ladeeda, finally got to read about your day. That sounds so nice! Does the wife have health issues to? Yep the kida are good. Have first t ball game tomarrow. I get to help coach the team this year(I am completly UN-athletic) sports challenged I call it. However, we had practice today it was fun. I was helping the little batters bat and was standing way to close! One sweet little boy hits the ball off the T then throws the bat backwards!! Right into my knee!! Ouch. Got a pretty bruise to show for it. He says sowwy! Then takes off runnin. I was laughing to hard to be in pain. Seemer glad to hear bout your mom. Keep us posted! Hubby has had a long weekend home due to the joplin tornado. The place didn't get destroyed but it had no electricity so he is just now getting to leave in the a.m. huggs everybody.

Ladee, the idea of showering together is fun, with my mother would not work because she hates to be naked in front of us, she would feel very awkward if I got undressed and jumped in the shower with her! It's always a problem to wash her because she tries to cover herself with everything she finds nearby.
I am very sorry for her because I know she is very humiliated by this kind of thing!

Ahh rosella that's so hard!

I keep a towel folded length-wise just once and as soon as the col is naked, I wrap that around her shoulders and she gets in the tub. Then she will take it off and lay it on top of the toilet until we are through. Then I put it back around her while we wait for the water to drain. Seems to help her modesty. I don't have a bit of trouble with her bathing anymore. Especially when I scrub her back with her soft back brush....she loves that. And I use Bath and Body Works gel, and she loves the different smells, her favorite is apricot.

ASG....our house is right in Galmey, down the road that is across the street from the Fire Dept. I think we're north of you. Are you closer to Humansville? I need to get down and clean one side of the house and the garage. We are leaving a lot of furniture and other items, but there are a few things I still need to get. Need to get my son down there with the truck so he can haul things back. Have a pie safe that hubby wants and I have no idea where to put it here....hang it from the ceiling I guess.....:)

Need to sleep now....have had a migraine most of the afternoon and it's still not quite gone.

Love and Hugz to all,
Jam