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.
Each and every time the cleaning woman comes my mom hides her purse (which is really stupid because all of her money is in her safe =opened=in her closet). Then after our lady leaves we have to hunt for the purse. Next time (two weeks from now) I am going to take that darn purse and keep it with me!!! Playing hide and seek was never one of my favorite games.
I am sharing what I am doing so that others will squeeze in a couple of hours of "me" time as I am trying to do. Even while I am at school it is not really "me" time if I am listening to profs and all.
Carol: let's make tomorrow our day to do what we need to do in order to keep our sanity ok? Let's use the word "enjoy" as often as we can. And let's meet back here tomorrow night to share even one moment of enjoyment (like me hitting the jackpot ok???) of the day. I will meet you here tomorrow night. Sweet dreams! SDPeg
So hopefully I can enjoy the day , at least untiI I have to get my Mother. Good night all. Hope for a good tomorrow. Carol
Carol, you may want to see your doctor and tell him/her how you are feeling. They can keep you from the black hole. Just so you know, I am giving myself a few more weeks and then I may go for something for depression myself. I already take lexapro for the anger I had, but now I may need something for the sadness instead.
See......not a funny bone in me tonight.......
Carol, there is not always a smile in the room when you are in the midst of the situation, and that is the truth. I learned to think about it later and file away more pleasant thoughts or quips to use the next time. I so know what you are going through with the wheelchair. My "transport chair" was only 8 lbs and it weighed a ton when I had to keep gettiing it in and out of the van. And I had to puch mom everywhere in the house cause it had 4 little wheels...it couldn't be driven, pushed or guided by her and she could barely use a foot to push her along. And mom just decided she didn't want to walk anymore. She had broken a hip, she had inoperable problems with her back and scoliosis, and she hated physical therapy. And it made my life hell. One knee was replaced and the other one could have been done, but to what end? It may be a temporary thing, but if she has good days, make her walk.
Notlike, palliative care.......When I was told about the lung cancer mom had during the last hospital stay, and that only IV meds seemed to be helping mom's heartbeat, and the constant uti's (and allergies to the best antibiotics), the lung and reg doctors suggested palliative care and I said only at this one specific "end of life" hospice facility. And that was how I described it to my sisters, mom's sisters, and I thought everyone figured out what that meant. Not so. My youngest sister was very upset about it. When mom went to the hospice center, she was given only pain medicine and oxygen, and even then, the nurses said the oxygen was there for us as mom was only breathing through her mouth within 36 hrs. There was no medicine given to treat her uti or heartrate. When she indicated that she was in pain or we didn't like the way she squinted, she was given pain medicine. I knew her ribs were already hurting, probably from the cancer. I took her to the ER on a Monday. She was seen, admitted, diagnosed, and treated, moved into hospice, and died in a total of 8 days. My sister was under the impression she was going to be treated???But no, she was just made comfortable.
I hope that answered your questions, and if I said anything wrong, I hope Jam will correct me asap.
I told brother that sis said that the life alert would not help her any and he said well i am not staying with dad anymore, I am getting on with my life. I almost fell in the floor and wanted to say, YOU HAVE BEEN GETTING ON WITH YOUR LIFE FOR THE LAST 2 YEARS. Its me and sis that have given up on having a life, having to work around schedules of other people that can come and help us with him. I would not dare tell sis what he said cause i think she would blow a gasket!!! I just don't think he has any idea of what we have been having to go through with this caregiving stuff. I love him( my brother) but it is not fair that me and sis have to hold all the responsibility of taking care of dad. Hell, it's his dad too!!! He should have to join in the fun just as much as we do. I just don't know. I am so sick of this situation. Just all of it!!! Everybody being at odds with one another. Schedules. Same shit different day. Just kinda in a blah mood today. And not really looking forward to another NEW YEAR of the same stuff. Whoop-eee!!! Just let it stay 2011. I wish i had a hole i could crawl into and hide where no one could find me. Well so much for dreaming.......... Thanks for letting me vent.......... Hugs stormyyyyyyyyyy
Mis-You said, I think, you have experience with NHs. Take your time and find one you are comfortable with. Please tell what you can about pallitive care...they have suggested that for my Mom at some point down the road and I'm still not sure I understand it. Thanks in advance.
emjo-you are the proud Grandma. Yeah!
SDPeg-I loved to arrange all my Barbies and play for hours. They were usually shipwrecked on an island...kitchen chair. Outside, they were lost in the wilderness. Perhaps a little bird knew where I was going to be when I grew up? Except Barbies didn't come with all the great friends on this site. :)
To everyone else...read all the posts for the last day or so. How troubling for some and liberating for others. When I read each post, I say a prayer in my heart for you.
Got myself in a tizzy last night, worrying about what next week will bring. Alot of people in this house right now, little time or space for me, and I went on overload. Too tired even to post. Better today after watching Pay It Forward with the 11 year old niece and playing human jungle gym with the little one. Realized I want to be calm and wonderful all the time, no matter what. And then realized there's no way that's going to happen anytime soon. Mom's behavior is too painful yet, and I really beleive it will only get worse as she gets sicker. But I do know I will get through it, by being myself, the best and worst I can be. With hubby's laughter and all of you here. Would someone please remind me of what I just wrote the next time I'm spitting nails and ready to cry?!? LOL
I guess what I'm saying is that I'm just trying to get through each day. Sis and I are having massages tomorrow (thanks to hubby for the Christmas gifts) and seeing Breaking Dawn. I need to just focus on what good I get for each day. And tomorrow will be a very good day, indeed. Unless Mom does something mean, then it will be a bad and good day. Rambling now...tired and ready to sleep. Thanks everyone for giving me a place to go where my day does matter.
Counting to 5 then taking a time out - too funny, must try it on my dogs. LOL
notlikemom
Lyn, I was wondering if you were ok, and yes you made the right choice about putting hubby in the hospital for med ajustment.... try your best to relax and rest while he is gone..... and yes it was hard, doing the right thing for the right reason is rarely without some intense feelings going on too... so let us know how he is and more importantly, let us know how YOU are... thinking of you, prayers and angels....
Love and Hugz,
Jam
Even tonight she gave my brother credit for something I did (knowing her words would sting) and tonight I just cannot be around her. Fortunately she does not wander and she is out looking for the purse she hides every other Tuesday when the cleaning woman comes.
Carol, I feel your pain. And the humor, it comes and goes, one cannot stay delirious all the time. We have all of the emotions here on this site ~thank God. I was thinking of all my friends going to New Years parties and I am sitting with mom. Not that I am a party girl but I would like that option. A caregiver comes tomorrow and my mom asked why seeing as I am on semester break: heck, to do MY thing every once in a while. He understands, bless his heart, and they get along well, so going every Wednesday whether I am here or not is definitely going to happen (altho I confess that I said when I was out of school no caregivers ~ I changed my mind!!!).
I feel your pain: lost, alone, resentful, bitter, wanting the old mom, not quite yet embracing this stranger who holds the title of Mom.
I have promised my children I will never, ever put them through this when I am old and not me anymore. Let a stranger who has not known me as I am today get to know the me I will be in the future. And if my children want to visit, please do, and I tell them now that in 30 years (or less) I may not know who they are in my brain, but in my heart I will always know who they are. I know my mom knows me in her heart, but her brain just does not have what it takes to remember who I am. Please know, Carol, your mom is mom as my mom is mom and we are always their daughters whom they love very much.
Hugs with empathy, SDPeg
How do you accept these things that happen sometimes ? Funny I knew when I went to get her that this was what I would find. I really think my mother enjoys sitting in a wheel chair as she acts completely helpless.
Please don't misunderstand; I know wheelchairs are a wonderful way for those of us with leg ,feet, knee,and those injured ,etc. problems to get around. I think it is wonderful. I just feel that my mother has so lost her will that she accepts this and wants it. I am a fighter and not very accepting. I do ask myself , Why?
I started this post saying I love the humor expressed by everyone. I just can't find humor in my situation. Though I love to laugh and I love jokes; laughter is not a part of my life anymore. I marvel at all the fun and ,laughs expressed by all. I know this a way of coping but I am so depressed I don't know if I can cope anymore..
Those of you familiar with me know that I truly love my mother but the woman that is with me is a stranger to me. My mother was strong , strong willed and very independent. Where -did she go? Vanished while I was watching; is that possible.?
Sorry this is long and probably boring but it is a place to vent and I guess that is what's happening..
I am overwhelmed tonight and feel very lost and alone. Happiness as not in my house , my life. I have lots to blessings but I'm having a hard time knowing it.
Thanks to all, Carol
I don't clean.....I'm allergic to brooms, vacuums and dust mops......:)
But this morning she put her hearing aids in by herself ... I hope the 4x6 index card I taped to her bathroom mirror helped. I wrote four rules about those hearing aids: no water, use gel, open them up, wear them daily. Maybe I need to post 4x6 index cards all over the house.
Has anyone done that? Put notes up about certain things. I was thinking of making a list of what clothes to wear and in what order (bra, top, panties, stockings, pants, shoes) and posting that in the huge walk-in closet she changes her clothes in. I was wondering if anyone else has done that? And if you have, was it successful or will you tell me to save my index cards for studying?
What do you think? Should I try it? I am thinking "nothing ventured, nothing gained" but I also do not want to offend her.
Today the cleaning lady comes. I was a bit more conscientious about my room. The last two weeks of school and the week before Christmas left this room a total disaster ha ha so last night I watched two Christmas movies and for four hours cleaned, threw things out, hung clothes up, decided what clothes to donate, etc etc etc. Finally a bit tidied up...feels good!
Then I hope to bring my filing cabinet into my room instead of the garage where I could file while watching tv or on the computer. I do have filing to do...don't we all? Don't we all have so much to do and not enough hours in the day?
I hope some of you get a chance to clean up the things that need cleaning up, to throw things out we do not need, and file things for another day when we really do need it.
SDPeg
New Years is another hard time as you don't want to start a new year without them It feels wrong, and that you are leaving them behind, when they "should" be coming with you and it can trigger your grief.
Be gentle with yourselves, memorialize your loved one in some way - a special candle to be lit at "those" times, music that has special meaning, a donation to a fav charity, photos - I have my collections of sad songs that I listen to when I need to get those feelings out, and a Gordie candle that I light and my fav picture in a place where I can see it easily. It helps to replace the memories of him in hospital. The mental images of them when they are going down can be very hard.
On a different note to those who know, I finally opened a certain Christmas card and some one redeemed themself a little - just a little.;)
Snowed again here but the cat went out so not too cold and going up above freezing today again. Hope we don't lose the moose meat. The garage is not being a very good freezer right now.
mis, this is a big transition for you -and especially your hub who is no doubt thinking about his mum. As much as it was getting too much having grandma at home, having her ill like this and going down hill so fast is not easy either (((((((hugs)))))))
carol - ladee is right -the respite is for you and you know you need it for yourself and your immediate family members and to continue to be the best caregiver you can be. Please let go of the guilt - you have done nothing to feel guilty for. You are doing your best to care for your mum, and looking after you is caring for the caregiver. Should you spend her money - you betcha! All part of the picture of providing good care for her and also giving her an experience of being cared for by others, which may be where she ends up anyway, As I understand it, when her money runs out, medicaid kicks it, I'm in Canada so maybe someone from the states can tell you about that. Sweetie - you count too.and your quality of life does.
maya - glad you know we are reading -you have a bunch of great stories and tell them well. Might be an idea to write out memories from certain periods of your life - and group them together. You could look at trying to get them published in magazines. People do it! Blogs are great too.
sdpeg - if the games have been going on for a life time they will not stop, they are not your fault and you can be very thankful that you have a sib who supports you. I am on my own with that. Now to figure out how to protect yourself. And let go of the guilt about mum not eating. The food is there for her, but throwing it out seems to be one of the ways she copes with life and it is not healthy, You keep mentioning you are petite - are you trying to make us all feel fat???? jk!
new years resolution - lose 5 to 10 lbs this year. Not a big goal but hopefully an attainable one. Then I will be close to or at what I was when I came up here over 30 years ago. Go north and gain weight. I saw so many people do that. Maybe it is the extra months of cold.
I was blessed to take home from my Christmas visit to my daughter's (not my gift)the black leather 3/4 length coat that doesn't fit her any more. She has lost 20 lbs.and is willowy again, It is good quality leather and warm and I have such good memories of her in it. - and it fits me. We are very different builds - she is very narrow in the waist and torso and has hips -real hourglass and I am heavy on top and slim hipped BUT IT FITS ME!!! When I wear it I feel like she is with me and that feels good. Emily was delighted with her clothes -all with sequins or sparkly thread, Sean was very happy with his money and munchies for the bus and Joel was the best - i gave him a couple of science kits and a cheap microscope - his response to the microscope "I looove it, I looove it" and this from a little boy who does not get that excited about things. At 6, he needs help with it, but between his mum and I, it is working. he is an interesting little guy - excells in math in Grade 2. likes to look at words backwards, and is fascinated by science, Em is a good all around student and a delightful, cheerful loving, person. Sean has been going through some personal stuff and come through to the other side and is doing well. Am I a proud grandma, You Bet!!!
Peg: our mothers often play victim because us, the caregiver children, control them and so they complain about us when they talk to the other children (the ones who don't take care of them). This is one of the bad side effects of caregiving. This is one of the things we have to be patient about!
Lyn: I am very sorry about what is happening to your husband and the car. For my father it was literally the most important thing in the world, and if he had had to give up his car it would have been a tragedy.... It was not like this for my mother; she didn't really care about it so it was not a problem to tell her to "stop driving".
Emjo I liked so much the story of the cat crunching the lights of Christmas tree. My cat Cocaine sleeps now on the top of a piece of furniture. Until some weeks ago, there was a big vase on that piece of furniture. One night I heard a crash - Cocaine had pushed the vase which got broken on the floor. Now I understand he moved and crashed a vase which was 3 times bigger than him, because he wanted that place on top of the piece of furniture.
Maya - I think you are right while you deal with our relatives, not to pretend that there is a good relationship when it is not true.
I didn't have a good meeting with my cousins. It was not their fault. They were very sweet. I felt like an alien, though. I feel so far from their world... from the normal life. It is hard to stay among people who have a normal life. For example they said they are going to have a pizza tomorrow night. As simple as that, For me, it means to find someone to stay with my mother while I go to the restaurant; it means to find the money to pay for that someone... which would cost me 4 times as the pizza... So of course I won't do it.
You know this kind of stuff.
My mother is still very quiet and absent and I don't know if it will be permanent...
Well okay tomorrow is another day.
Maya, I was thinking about you keeping a journal... and to write like you are telling it someone else... like you do us... I keep a journal, and I just let it run... no one sees it but me, doesn't matter if it makes sense to anyone else, or words misspelled, it's getting things out of my head.... and I don't want to read your personal stuff sweetie, what I meant was if you were ever published I would read what you wrote... don't open you life to the world. That is something very personal between you and your friend.... but you are very very talented, sure wish you would consider starting that book.....
Ok, I really am going to work tomorrow, so need to get stuff ready. I wish I did not have to work.... but this is what I have chosen... so one foot in front of the other... love and hugs to my freinds.....