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.
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
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
Love and Hugz,
Jam
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....
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
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
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.
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.......
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
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
Blessings to all.
notlike- pallative care..agree with seeme. It's hard for me to explain. My mind is going in a million directions. It's helps with the "end of life" and gives them diginty and respect.
lyn and Carol- ditto to what Ro said.
Yesterday, Rob and I met with the pallative corridator and decided to put grandma in hospice. We felt it was the best choice and are following Grandma's wishes. Grandma will be moved from the hospital to the hospice house as soon as a room becames available until then she'll stay in the hospital. When we got up there our nieces was there and that she knew them. Rob had grandma hold a spoon in her left hand and he told her to put up to her mouth and she did. She just fed herself once. Before the girls left I went down to the gift shop and got one of those gossip magazines so I could read to her. She knows that we are there and shakes her head when we ask her yes and no questions. When it was just Rob and I there, well Rob farted. I told grandma " jr, just farted and he about blew me out of my chair." She laughed even though no laughter came out, but we knew she did. We don't know if she knows what kind of condition she's in so we're going to ask her today when we see her.
Yesterday morning and last night we were going through some of her drawers. Oh my gosh, grandma must be part squirrel. Why? I can't tell you how many cookies and crackers we found wrapped up in tissue or paper towel. She was horriding them for the winters we have in Michigan.. We found a key chain that reads " the best diet is with cookies in both hands.' Yup, Grandma is our cookie monster.
I've been keeping her nieces update with what's going on with Grandma and called them last night plus her best friend is 86 yrs young. One of her nieces who lives in Loiusanna and her other one lives her in MI both thanked me for taking good care of her and had me in tears. Her best friend who also lives in Louisanna thanked me too. All 3 of them said that they didn't know where grandma would be if it wasn't for me. I've taken care of her all of these 4 and 1/2 yrs. They made me cry. Her best friend told me that she wished that she was lived closer to us. I told her that even though she lived so far away I felt like I've known her for yrs.
I feel asleep last night in grandma's lift chair. I guess was just so tired with everything going on. Rob left me there sleeping and I'll tell ya I didn't wake up until 5:30 am. I slept pretty darn good.
Well I need to get off of here and get some things down around here, it helps me to deal with everything if I keep busy....
Until we chat again The Laundry Room Bar & Grill is open and make yourselves at home...
Melissa
notlikemom, yeah, we need to be grateful, until something bursts our balloon.... I know you are so tired and have your hands full.... guess there are days we can only do this 5 minutes at a time or loose our minds....think of you during the day as I am answering Sonnys same question for the hundredth time.... but he is not like your mom, he is very sweet and I am blessed to be a part of his life....
And for whatever reason, Marie has made a major turnaround... guess she needed to see that I could be trusted, that I will do my work without being told, and that I will also question her when she is taking things out on me... she hasn't been ugly in a long while...but I have also fine tuned my balancing act.... she needs attention too... seems the more she gets the easier she is to get along with....she got a beautiful poinsettia for Christmas from a Friend, yesterday she said it may need some water... I had already watered it , and picked off the dead leaves... she always seems surprised that she doesn't have to tell me every thing to do... maybe some of it is the last lady she had in to help....doesn't really matter, she has not been difficult for months now...and I know how to handle her when she starts...
When I approached her about taking Sonny to the Senior Center this next year, her first reaction was NO... I asked her to think about it... we could try it, if he gets on overload, we won't do it... but explained to her that he is bored and getting depressed.... he is a very social person... and of course I would stay with him, I think she thought I was going to just drop him off..... uh no, he would be lost without someone familiar.... she could have some time to herself, I could get out of there for a little while, and it can be a win-win if Sonny likes it....
She is letting me help her more after I sat down and talked with her about some things.... that I know she is very capable of getting her own clothes out, tho it is a problem with her balance... she does it when I'm not there, it's just to give her a break.... she warmed to that idea.... so one more stressor aliveated....communication with compassion works wonders... and humor... Sonny has not been wanting to shower.. so yesterday I got everything ready and went in and said "time for a shiny hiney", didn't give him time to get upset, we just went and did it... told him, yeah, you were hoping I forgot didn't you... and he laughed... him and I have "secrets" , like when I find candy in his pockets, we don't tell Marie... when he wants to put a napkin in his pocket, I help him, where Marie can't see.... he just loves thinking he is getting one over on her....
Awhile back she was leaving to go to the Dr. we were standing outside, and he looked at me and said" that is one mean lady right there" but we both fell out laughing....we laugh a lot and it is so therapeutic for him and I both.... and even Marie will laugh with us now... times to be serious and then times to say to hell with it, life is too short....
So hope ya'll can find at least one thing to smile about today...
Am really looking forward to getting to meet a friend on this thread, her husband and her will be here in about a month.... it will be fun.... so some of us will get to meet as time goes on... reinforces that we are not alone.... hugs and angles to my friends...
Sis is not receptive to the idea of the life alert....because if something should happen to Dad and she isn't there, she would find it hard to live with the guilt that it happened on her watch. Well, things happen regardless, even when you're standing over them and there's nothing you can do except watch it happen. There are some other things you can look at to give you some help. You already have outside help coming in....can that be increased? Does Dad's monthly income cover his living expenses and the cost of help? Does Dad have other insurance? For instance, the col has Blue Cross and the policy covers 25 2-hour medical visits per year......not much but better than nothing when something is needed. Maybe sis would be receptive to starting out small....getting Dad situated and then leaving for an hour or two.....building up to maybe a morning or afternoon. And there is also placing him in assisted living....he would still have some freedom but is watched over and the rest of you would have your lives back. Take your breaks when you need to.....you are too young, with a young, growing family, to make yourself a slave to the care giving. And by the way, if brother doesn't want as much responsibility in Dad's care, it's time to remove him as POA. Just something to think about.
Good to read from you DeDe.....and glad mom is adjusting well. That makes it so much easier doesn't it? Come back and visit more often!
Been sitting on the computer making hotel reservations for the Spring Vegas trip....geez no one told me it was a Nascar weekend....no wonder every time I went back to a place that had cheaper rates they were gone. So we have a room at one of our favorite casinos but we like to stay downtown and I tried to find rooms but it was cheaper to just stay where we will be. So five nights will result in lots of comps coming our way next year.....woohoo! This will be the first time in several years that my son and dil won't be going with us....they are saving up for either a Disney cruise or a trip to the San Diego zoo.
Hope everyone is having a good day and I will check back later.....nothing going on here except a bunch of sleepyheads....lol
Happy Trails,
Jam
SDPeg