This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Well, not much else going on with dad. He is pretty much the same. Coughing on just about everything he eats. Mary( the lady that sits with him) brought dad a hot dog today and it had chili on it. Dad was eating it and drinking tea with it and out comes a mixture of chili and tea out of his trach. We tried to get him to eat the plain hot dog(nothing on it) but he loves that chili, so thats the one he ate. Can't tell him nothing.
Jam- i think it was you that was asking when dads swallow study is and it's not until the second week in nov. That is a long time to wait. They probably won't tell us nothing anyway.
Shawna- Happy Belated Birthday!!!!!
Ladee- how is sonny and marie and ladee??????
Emjo- is it cold there yet?
Jam- sorry col is itching to get home already. Try just switching the subject on her and maybe she will forget what she was talking about.
Maya- love the stories....
Sdpeg- glad that your mom is still holding onto her weight.
cmag- you still enjoying the mancave????
Ros- don't work to hard.....
Well, ya'll have a great nite and sorry if i forgot anyone. Hugs to ya!!! Stormyyyyyyy
Haven't read back any posts, need to keep up more, Welcome to the new posters, and I hope that you all are getting some well deserved rest, Shawna, sounds like you are going to have your hands full with the holidays, glad to hear it.
Big hugs and more pic's on FB to come.
Carolyn I know how much it is difficult when your mother doesn't cooperate. It took months and months, maybe years, before my brother and I convinced my mother to accept a help part time. The same happened with my aunt... She refused a help for a long, long time.
Unfortunately (or fortunately) there will be one day where your mother will be scared to live alone and she will accept a help.
Jam, I am the last person in the world now to talk about dogs and give advice about them. But I think your COL's dog feels sad without her and if she has never taught him to pee outside, it is difficult to teach him now. Poor creature. Use a diaper if it is necessary... And try to be patient, none of this is his fault.
Happy hallowen and Allsaints to everybody
Kiss, Ladee
maya hope your mum gets through the night well
stormy - sorry about your dad and the chili - bet lil red looked cute!!! not too cold yet
starri - great to hear from you - no snow yet but can't be far off - bikini weather - Oh my goodness - can't imagine
bee - must be so hard without full vision - ur mum is quite a worry to you I think
sdpeg - the term in winding down now - the light is at the end of the tunnel -
mis - Gary loves huntng -the challenge I suppose. and being outside - and i don't mind getting the wild meat - this deer is good -fed off the alphalfa
tpeg - will fil be staying with you or is he going home at some point?
ros - try to get some sleep - u r burning the candle at both ends
jam -agree with ros -the dog is missing the col - they do get attached to one person and to a routine and that can be hard to change
ladee - hope you are getting refreshed somehow - u mentioned retirement envy - I worked till I was 73 -heck if it wasn't for mother I would probably still be working
everyone know we are thinking of you
have a good night
love, hugs and prayers
jo
I understand about dogs missing people, Claire our little shitzu when we would leave and leave her at home, she'd head for my brothers and camp out there till we got home.
Jo, I thought you had had snow already, we got a little our last night in Utah, got to get those pictures on here. Sweet Dreams everyone.
An assignment is due so I have to complete that before going to bed but I just wanted to share that I appreciate the loving support I receive from all of you. I am thankful for the input in difficult situations and so I ask you to please share with me the joy I feel tonight that Mom's meds are obviously working well and that she had a good night. One holiday at a time!!!
My heart is filled with gratitude for you, my friends.
Always,
SDPeg
SDPeg, glad to hear mom had a good time, maybe she is getting on the other side...
Starri, good to see you, and bikini weather, you mean like Texas summers??? Hope you are feeling better and waiting on pics...
emjo, hope your new 'mission' is moving forward,love ya
Ro, think of you all the time and hope you know I try to carry part of your broken heart, lots of love...
Maya, how was mom's night, and hope you got some rest...
Jam, who won the game???
Seeme, so good to hear your voice yesterday.... love and hugs....
Have to go to work early today, so know I missed someone, but love you all... later...
I did forget to ask how you are Bee from N J, what can be done about your vision.... prayers for you.....
I was her first responder, so I got the call to go and check on her. She was another hard headed woman. She wouldn't admit to herself that she shouldn't be living alone. And one son was more interested in her making sure that her money bypassed probate than he seemed to be in her recurring bouts of pneumonia.
On a more pleasant note, we had 150 treaters last night! I don't know where they all come from, but it was fun to see them. By about 7:45 we were down to 10 pieces of candy and I was tired of running to the door, so I turned off the lights until next year.
Now, this morning, I heard the first of many Christmas Carols! OMG.
My mom's health was marginal to say the least and through encouragement and support from her doctor, I took the bull by the horns and hired another caregiver so mom has two: one male, one female to balance the gender roles.
And also I took the bull by the horns and said "this is what we are now doing" regarding the caregivers and other scheduling that is necessary for her to maintain her residence in her home.
Also I am a full time student but will take two courses next semester so as to have more time with her and adjusting to her new life without my Dad (RIP: 9/15/2010). It has been a roller coaster ride that's for sure, I kept my eye on the prize, had support from her doc and nurses, had NO support from one sib and long distance support from the other (thank God for this one) and the best support has come from this group.
Each step of this long, long road I have been accompanied by the most wonderful people. We are all in this boat together, let's keep rowing, and let's keep our life preservers on.
As I mentioned in a previous post over the weekend, we all have different crosses to bear, mine will be different now that Mom's meds are kicking in ... she may go back to "bossy" mom ha ha and your cross to bear is something else (no competition, just sayin' our circumstances are different for all of us). The important thing to remember is that we chose to be the caregiver, we can walk away at any time, and if we choose to stay there will ALWAYS be the naysayers who just don't understand why we do it.
It is a blessing or a curse at any given time, just like anything else in life.
I too heard a Christmas Carol over the weekend!!! Gosh, coming so soon right?
It is a waiting game and I have struggled with staying, walking away, the judgements of others, and my own heart that says it is worth the wait. Hang in there, post often, and scream when necessary!
SDPeg
Yesterday, my sister told me that Mom said her (deceased) sister, Virg, told her she's crazy. From the way my sister told the story, it seems Mom must have been telling Aunt Virg about the "rude, disrespectful" kids who never sit down to eat with her.
Wouldn't it be a hoot if Mom's hallucinated humans convince her she needs help? We living, breathing humans can't seem to have an impact in this area.
Maybe I should talk to Aunt Virg........ LOL.
Carolyn
Maya – did u get out for a walk? Sidewalks are good, hope mum is good this morning and u don’t suffer too much from lack of sleep –thx for the pic of Drew - what is he holding? I haven’t gone that far with the telesolicitors but I always interrupt them and ask “Where are you calling from” and do that twice then ask what they are calling about – it really throws them off - then I tell them I am not interested and take my name off your list. I like your ideas – ur mum shot an AK-47 in Somalia??? Wow
Sdpeg –sounds like the doc is satisfied with ur mum and a good time was had by all re Halloween –a day veg’ing sounds good to me. I am a “Murder She Wrote” fan too!
Ros –Gary likes fruit compote with every meal so I make lots of them - we had a spicy orange, plum, prune with cloves and allspice (tastes a bit like mincemeat) one with the deer. Next time it will be a cranberry/apple/orange with cinnamon
Cmag –sounds like you enjoy Halloween as much as the kids
Cg aka bee – ur mum threw out home care? – sounds like mine. Please let the guilt go – u r doing all u can. Mine would never consent to a cognitive test and told one doc off for trying. Hope you do continue your studies – what area r u interested in? 150 treaters Oh My! - hey maybe the “visitors “ will convince mum she needs help -sounds like her sister (deceased) has her head screwed on straight lol
Seeme – rain and Halloween don’t mix well – hope ur tummy is better
Mismiley –I started putting some scented (clove and cinnamon) pine cones in baskets so I guess I have started with Christmas too. Too bad about the boots –warm feet are so important – walking at work counts. Grandma’s cake sounds lovely
Jam – glad the col got some therapy – hope her dog is adjusting
Shawna –now don’t eat all that left over candy – use it for stocking stuffers –glad you have work for Christmas –how many kitties DO you have?
Starri- looking forward to more pics
Stormy – hope dad is OK after eating the chili
Lisa – I think most caregivers suffer from exhaustion at one point or another – glad to see u posting again – hope dad agrees to some care if the symptoms continue – congrats on graduating from college and hoping u find a job – come back and let us know how it all is going
Strange evening – after I returned from shopping I saw something on Gordie’s bench across the street (for the newbies – my youngest son Gordie died age 23 and I had a bench put up on the trail across the street in his memory). It turned out to be a bunch of yellow lilies with a lovely card. I took pics and then brought them in. It sent me for a loop for a while that after 9 years someone who didn’t know him that well remembered and cared enough to do that. My contribution to the season was a spicy hamburger pumpkin dish and preparing the rest of the pumpkin for pie for tonight – with pecan crust - and the seeds for roasting. Gary put up one curtain rod yay!!!! – only 3 more to go and 12 blinds! Got in touch with one more cousin, which is nice. One renter has another place for the end of November – think the other one does too, so then the big clean out will start –Oh joy! Don’t want to think about it too much or I may run away from home.
Love, hugs and prayers ♥♥♥
jo
Glad to hear everyone had a good night with Trick or Treaters!
ladee.............KC WON!!!! 23-20 in overtime. Our field goal kicker's leg was in fine form last night.
Care giver, no care giver, place or not place.............it's a personal decision that each of us has to face at one time or another, unless the Good Lord steps in and takes that decision out of our hands. It's not easy either way you go, but the end result must be having the welfare and best interests of our loved one first and foremost. We have gone through the decline with the col to the point where, for her, the best thing was to be placed in assisted living. We went from realizing there was a problem, to being more alert to a decline, to moving her closer to us, to realizing I couldn't do the task alone, to hiring care givers, to realizing that even with 3 people caring for her she needed more, to placing her. It was not an easy decision to make, but now that we have, we are at peace with it. I think one of the biggest advantages I have seen so far is the social interaction she is getting. Most of you know how I was always frustrated because the only thing the col ever wanted to do was go shoppy-shoppy or out to eat. Now she rarely answers the phone in her room and says it's because she is out visiting with some of the other residents......yippee!!!! And she looks and sounds happy. I don't look at this step in her life as a failure on our part, I look at it as wanting to give her more and give her what we weren't able to. She is loved and cared for and Target has more interaction with her now, because the constant whining, arguing and haranguing from her are not present. She still thinks it's time for her to come home, but I think that will always be present and there is nothing we can do about it. That's my two-cents for the day.
After some of you were talking about Christmas carols, all I have seen on tv this morning are Christmas commercials.....too darn early. I usually start asking the first of Sept for a Christmas list from my kids, that got put off until 2 days ago....this is going to be a rapid shopping season for me. The day is 1/2 over and I don't have much done yet.......
Love and Hugz,
Jam
Well done!
I'm so glad Col is settling in. This must be a great relief for you.
Jo, You make me hungry. lol Years ago I lived in AK and dealt with moose and caribou yearly. What a lot of work! It was worth it then, but I'm spoiled now. I am happy to let butcher shop do all the work. lol What a wonderful "rainbow" in your day, to have someone remember your son.
Shawna: Kitties? Love them! We have two rescued cats, Gus(tav) and Tobi(as) who are 3 and 1 respectively. They are my wonderful companions.
Everyone else, I'm sorry, it's just visually hard to keep up with everyone every day. But I do eventually read your notes.
Today the contractor finished the roof! PTL!! I was so tired of the hammering over my head for the past 4 days. Today I had quite a nice long conversation with my middle brother who has had 3 brain surgeries in the past 5 months. They took a section of his skull out because it was infected, so he's on disability. (Therefore, not able to help with Mom.) But .. the joy of the conversation is that we did not discuss Mom's problems, not even for a minute. It was very refreshing and I don't know how it happened. But it was GREAT! We connected in a way we never have before. This is my "rainbow" for the day.
Now I must go accomplish something before hubby gets home.
Oh, I forgot to mention, I found a website: LBDa.org. They have a lot of information on Lewys Body Dementia, as well as, forums like this one.
Have good evenings, friends.
CG aka Bee aka Carolyn lol
BEE
The feeling of overwhelm is real and then having the "Mayor of Crazy Town" to take care of intensifies the "overwhelm".
I am not equipped to help regarding the relapse (perhaps others here are equipped). This group is very wonderful in sharing personal stories and perhaps one of theirs will help you.
In the meantime is there any individual or group that you could contact that could help you with your relapse? And any community/church resources you can tap into while you feel so overwhelmed?
SDPeg
Starry I am happy you enjoy sunshine in California even if you are not at the beach!
Mslisa, I am sorry, you seem to have a very hard time.
Ladee thanks I appreciate so much your support. Yes it is very hard!I miss my little one so much.
Yesterday we had a very nice walk with the 3 remaining dogs, and one of my little friends, the one that you see in the picture on Facebook with the donkey. We met 3 boys (from 6 to 10 years of age) and they came with us and the dogs. So I walked with my dogs and 4 children and I liked to see them laugh and play together! Rexy was crazy, 4 people throwing sticks!
Carolyn 150 kids coming to your door is quite a lot! I guess you had bought a ton of candies. I like the idea of your aunt Virg talking to your mother. Who knows! Maybe she really talks to her. "There are more things in heaven and earth, Horatio,
than are dreamt of in your philosophy"
Jo, what a nice story about Gordie's flowers. Seeing the pictures I thought you had put them there. The fact that it was a friend, is even sweeter.....
It's morning here and I have to do some errands... No work today. Better! I hope I have some work tomorrow.
Please, take care of you! If someone else has to take over other aspects of life, so be it. You are precious!
My brother told my mom yesterday that he plans to come for thanksgiving and bring his ex wife now back together and daughter and two children. she asked me if I knew..no mom first I heard of it! Soo I send text to see if I can get days he will be here...hubby comes home the night before...no response....absolutely sucks! So blah yesterday cause I let him have power over me... Ok I can play that game too! When he walks in I will be ready to leave somewhere anywhere. One day a week to have someone here is just enough to keep me out of Insane but I really need some time to just chill.....oh well ...I will not let this get me down...I will not let this get me down.......
I thought (ha ha erroneously) that when my brother came to visit he would take my mom places so I could get some rest, watch tv, go out and have time to myself, get homework done ... NOT!!!
He spent his days visiting my mom texting my sister complaining I was avoiding him, hiding in my room, refusing to talk to him etc. I laughed because one day he said I wasn't home to purposely avoid him. WHAT? I was at the university sitting in classrooms learning and earning my degrees!!! He thinks he has that much power over me? That was actually very funny.
So my advice to those who hear that family members may be visiting (with or without exes, children, friends, etc) let me know NOW that you will be awol during the day(s)/time(s) they will be with mom/dad/family member/etc. Direct communication puts YOU in control. (My therapist is helping me with this.) Even though we may hear from others and not from the source, we CAN have the control. So if that means that when brother shows up you exit ... FLEE!!! and be FREE!!! and have FUN!!! And if he says you are avoiding him say "nope, just want respite care and thanks".
My mom had said with my brother here she wanted one-on-one time with him (although he brought girlfriend ~ that's another issue all together). So I respected her wishes ... so if he would have asked if I was avoiding him, I would have explained it was my mom's wishes and had nothing to do with him. I will do the same thing when my sister visits ... they don't come that often and I am here 24/7 so my mom should have that time with them. And besides if I didn't live with mom, they would NEVER come to visit me myself. So the visit isn't about YOU or ME, it is about the person they came to visit.
Oh dear, rambling on again ... hope that helps.
He does not have control over you.
He cannot let you be down about this.
SDPeg
quiet day on the thread - hope everyone ihad an OK day
still no snow here - that is a bonus into November - pumpkin pie in the oven -
Mother is happy as she got a letter of thanks and a lapel pin from the provincial govt opposition for her advocacy for seniors in health care etc and also she got some recognition from some people in a seniors group. She thinks she has given them things to do - she may have given them some ideas, but I do think they had things to do before she came on their scene. Whatever! She is happy for a little while and says I helped her - nice to have a positive amongst all the usual negatives.
Hope everyone has a good evening.
love, hugs and prayers ♥♥♥
jo
SdPeg and Vic my sil just might be related to your brothers and sdpeg's sister. She's exactly the same way except for she only comes over when she wants something cause she thinks her grandma has money. That the same for my nieces but at least they call every once in a while to see how their great grandma is doing. Both of them are in their 20's and starting families and work so I kinda of understand on their part. My sil lives in a fantsy world so to speak. She stayed with us for a few months and thought it would be fun. She quickly found out it wasn't. She works in fast food and claimed that she was tired all of the time. I quickly nipped that. I told her I work 40hrs a week in factory doing cleaning and when she has days off she needs to be cleaning this house and where she sleeps at cause I'd better not see a mess when I come home. Yeah I was a real b towards her. I don't like her anyways, but being lazy made it worse. When she moved out I celebrated. I just don't like fake people all caring and trying to be serious but coming off as being fake.
I went back to the foot doctor today and got my results. He said that they are in the normal range. They took a biopsy of my skin just above my ankles to read the nerves. I almost jumped for joy when they told me that it was normal. I said that's good to hear even than I have a mutant gene. I have to go back at the end of the month and get a PAD test. I already know how that's gonna come out. I only have one vein in my leg that brings the blood back to the heart. Plus I got a script to get diabetic shoes the place is suppose to call me back to see where I can get them at. If it ain't one thing it is another. Oh well I'll just roll with flow and see what happens. A famous tv preacher once said " Tough times don't last, but Tough people do." I tend to live by those words. I ran out of time getting my Christmas lights out to test them and I sure won't get it tomorrow either cause I have to go to Detroit for training. I hate driving in big cities it takes me out of my element cause there is no trees around.
Hope everyone has a good rest of the week and will check in if I'm not too tired from the drive tomorrow and Friday.
Hugs to all and still praying here.