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.
sdpeg - google Megestrol - it is a hormone, a chemotherapy drug and an appetite enhancer used in serious cases of weight loss, malnutrition - not like boost at all
I have been thinking about your long post, and I think you are on the right track. You and sis (and you are fortunate to have her to walk through this with) are acknowledging the family secrets, the dysfunction, you are grieving the loss of what you thought you had, but never did (see the "On your mind" on my profile. You are expressing, and sharing your thoughts, and feelings, which I think is necessary to fully accept what you have lived with and work it through so that you are healthier. You cannot change your mum or your bro. You can change and proitect yourself and get some healing. It seems - very clearly to me - that your mum has an eating disorder, as well as possibly the loss of appetite with aging and grief. This needs medical treament as seeme has suggested. I don't think there is a whole lot you can do about it without that. If she is "hurling" boost or such she may have anorexia or bulemia. ( maybe I have read that wrong). Bro does sound very dysfunctional. How can your dad who is dead still be on accounts? Seems like that should be cleared up, but your hands may be tied other than asking the bank manager or something like that. Have you any evidence that your bro is abusing his power in the sense of using the funds for his purposes?
A frank talk with the doc sounds good -and protecting yourself by limiting what is written down. That bro has a neighbour watch your comings and goings is bizarre in my mind, and very controlling. The neighbour is not too healthy either.
I would discuss this all with a professional too - perhaps your counsellor at the college or a socail worker and look at what you can do to improve your situation and still see that your mum is looked after.
lindy -glad to see you again - there comes a point and you have reached it. Good for you and get rid of the guilt. You have done your best
roger -glad you got some perspective -come back and share more - we have all done things, that looking back, we would have done differently
mis -sounds like grandma is in a wonderful place and well looked after and maybe you can take a liitle break now - a gg grandbaby coming -awesome -keep us posted
ros - antid's do not give most people a false Nirvana -certainly not me - they just make it easier for you to cope - and stabilize your emotions so you don't get as irritated etc. You might want to reconsider and often people have to try different ones till they find what works for them, ((((((hugs))))) you are doing a very tough job very well
stormy ((((((hugs)))) I expect it is due to the streching. have you talked to dad about the alert yet? Sis prob has, as someone said -some guilt to deal with if she lives that close - guilt is such a tough one, but needs to be worked through. You both are doing an excellent job!
burned -let us know what progress you made with jam's suggestions
carol - sounds to me like your mum is declining and you are grieving -which is normal and healthy, you are losing her in more senses than one and it never is easy to go through that
vic - ever the good daughter - bro needs a smack on the side of the head for not looking after dad's butt - but at least he came and you got some part of a break - maybe next time he will do better - or you two can work it out somehow -
notlike - oh my how things can build up or slide down fast - sounds like mum is avoiding her realities - and that's where she is - her way of coping -now taking it out on your I have less sympathy for -with some of these situations you have to wait for a crisis - meds, finances etc before you will be able to step in and take over more - glad you came and vented and keep doing it - the cave is getting decorated, but the laundry room might be warmer. -stock up on the sherry and green tea!
ladee - hope ur leg is better today and you are not exhausted from a long day ((((((hugs))))) weekend is coming
jam the mother indeed, - how are the teeth doing? Guess you are ok now and it will be a while for the next stage. I pulled out bone chips for quite a while - sounds like the col has adjusted - good move
cmag - prayers going out
lyn - prayers for you and family too - let us know how things are
maya - hope the computer is sitll working - and the cousins are staying the **** out of the way - boy they have a lot of nerve!
anyone I have missed -not intentional - check in and let us know how u r
here I have caught a bug so lying low and need to sleep - not sure if going north makes much sense for me this weekend - I will see how I feel later on. My prayers are for a better year ahead for all - one way or another. Even little improvements can make a big difference.
now for some seeme zzzzzzz's ;)
love, hugs and prayers♥♥♥
jo
My mother gave me 13 acres of land and the money to finish my house so I don't have a mortgage. She would give me the shirt off of her back and I am ashamed that I got pissed over poo yesterday. :-(
Brandy-right there with you. We will all get through these messes together. Think of you today and sending hugs.
One smile today? I can do that. It's Friday, and it's payday. :)
Ro, not all anti's are like what your brother is on... wish mine made me feel like that..lol, but you have your own ways of coping, just worried about you... send you tons of hugs everyday....
Stormy, sorry dad is so uncomfortable... he just can't catch a break can he.... what a horrible way to live.... hugs
Carol, I know for me my fear comes out as anger sometimes.... when I don't understand something, and all I feel is frustration, seems anger is what comes out..., but you are talking about it and trying to gain some understanding, so that is very good... you can do this, we are here for you...
Vic, miss ya girl, but glad to know you and hubby are getting some alone time... won't do any good to tell you not to worry, that is your dad, and you can go over and put cream or powder on him and still enjoy what respite you have left.... love ya and miss ya...
notlikemom, it amazes me you are still sane... and unfortunately this is our normal.... just keep coming here and telling us what is going on.....you are sent prayers daily... know you are thought about everday.... hugs
Brandy, come here anytime... as Jam says, "we'll leave the light on for ya"... I love how that saying makes me feel. that I have a place to go not matter what....
Today is my long day.... that'll teach me to take a day off won't it.....
Hope everyone finds one thing to smile about today, one thing to be grateful for, that you get and give hugs... and when a stranger smiles at you, that is me saying we can do this, together.... love and hugs....
Since Christmas I have been challenged into seeing the intimate relationship my brother has had with my parents for over 25 years. I guess you could say as the layers of this onion are being peeled away I am crying my way through it to get to the center of it all. Unbeknownst to me and my sister, my brother has been interwoven into more areas of our parents' lives than we were aware of. The power struggle we thought started when our dad died last year really started years and years ago. We had no idea how many pies he has his finger in. I guess she and I have learned that he will not abandon his post of being in charge...it is too ingrained in him all these years. Every time I try to mention his involvement with my mom her response is the same "that's how Dad wanted it". It is a lose-lose situation for me and my sister.
I know my mom says she appreciates all that I do for her but to be brutally honest, because of the sneakiness and deception that has been going on for years, a part of me has lost interest in being here and caring for her. It is not that I want to be on her accts (because I don't) but, and I cannot describe this very well in words quite yet, I feel as though I have been lied to like when I learned years after my divorce from my ex that he had been cheating all along. My mom says it is her and me now and everyone else can live their own lives yet when I took her to the bank (after speaking with the bank manager three times one day to make an appt) she told me my brother took care of it. The hero worship is getting old really fast.
I am on school break and as I see how interwoven my dad, mom, and brother have been for years as my sister and I sat on the the sidelines, my heart breaks that parents who wanted to know about us and our lives were keeping secrets. Oh I will be honest, this secret life with my brother has been going on since the 70s when he got arrested as a minor and no one told us until years later.
I guess if I had to find the words I would say that my sister and I are grieving he loss of the family we thought we had and we are trying to make sense of the madness and we are trying to peel the layers of an onion without shedding a tear. She recalls conversations with my brother that she sees now were lies; I see my mom just wanting company and someone to drive her around while she worships the ground my brother walks on.
I don't know if I penned my thoughts very clearly and I am not seeking advice but moreso just sitting here in the middle of the night wondering why one child has been chosen as the "chosen one" while my sister and I have been left out and unaware. I feel more sorry for her as she has had a relationship with my brother and I have not so there is not a great loss in that regard for me. She is reeling in shock over the betrayal as he never mentioned being on accts with both of my parents over the years. He broke bread with my sister over vacations; he had daily conversations with her about life; he included her into his confidences about his divorce and new girlfriend and being fired from a job. Her loss is huge. I feel my loss is that I moved into my parents house is 2004 to help out when my brother upped and moved from five doors up to half way across the country to escape the family but they were all still intimately involved although my Dad felt betrayed by his son as he thought his son was going to be here for him forever. I guess how I feel is second fiddle to the relationship my brother has had with them. If he still lived up the road I would not be here. My brother is the chosen one. Although I have written about that over the past few months, finally accepting that is like cold water being thrown in my face.
Why am I writing this? I don't know. Just need to vent I guess. Just need to find a way to still "service" mom while knowing she would rather it be my brother here. I am learning too much that I wish I didn't know. I was shocked my mom cannot even get a new cell phone without my brother's permission because the two people on the acct are my dad and brother and that acct is at least 10 years old.
I recall a favorite phrase by one of my English teachers when she had us write papers: "why does it matter?" I don't have an answer to this right now. I don't know why this matters so much to me. I guess growing up our family unit was always "one" and learning it has not been for many years is causing a shift in my belief systems. As I analyze what I thought was my truth I find out it hasn't been the truth at all. I guess that's what people call a paradigm shift: the world as I knew it never really existed. The world my sister and I believed as "mom and dad" was not; it was "mom and dad and brother".
This makes no sense, this posting, I don't really know what I am writing right now. I am not even sure why I choose to share this today. Maybe many of you, my friends, have this experience and you can gentle hold me while I grieve the loss of what I thought our family was; perhaps you have some insight in where I go from here with this new reality; perhaps I am still asleep and will awaken from what I consider a nightmare. Life as I knew it did not even exist. My sister and I have been lied to into believing a truth that has not been. (deep heavy sigh)
My mom asked why I have been barking orders to her lately. I told her I am on vacation yet making sure she had a good Christmas with family, clean clothes to wear, and spending my vacation arranging all of her appts so they get done before I return to school. I reminded her that my sister and brother took vacations to come and visit yet I have not enjoyed a vacation (I left for one week in July and she called twice and hung up on me and so did the daughter I asked to stay here with her). You all know what I mean about needing a vacation. Even when I go out with a friend we invite her. And when I do go out alone (if I am not supposed to be at school) she thinks I am mad at her and not coming back. I am here only because she has a fear of being alone but knowing she would rather it be my brother is a bit heart breaking to me.
Well there I go again rambling on about him. It is not necessarily the duties of caregiving that is making me exhausted. I ran a day care and did everything in routine so I can do things now in routine for my mom; I am exhausted because it seems like every time I turn around I have to do something for her and my brother gets the credit. That is my area of fatigue. She does sing my accolades for some things but just knowing she would prefer it being him makes my heart very sad. No one wants to feel as though they are second in command to anyone. I don't like the feeling that my value is only in comparison to how she feels about him.
I feel frustrated because I know there is nothing I can do about any of this. Maybe helpless is another word for it.
I am making changes in the areas I know I can change: prior to Christmas it became apparent that perhaps a neighbor has been watching the house and telling my brother the comings and goings. So finally I got my car into the little garage. I thought it was too long with the cabinets in there but it fits if I park it and go out the passenger door. That way no one can call my brother and tell him if we are home or not. I want a life that does not include him micromanaging. So when mom and I do go out we use her car while mine stays home. The wear and tear on my car cost me too much this year; let's put some wear and tear on her car (altho I don't like driving it I will just to save mine). I don't want my brother intimately involved in my life knowing when I am home and not home. Too much weirdness. So at least my car is housed and taking a break from being run around.
I'm sorry this post is so long, hope I don't lose it, maybe if it does get lost as others have it will be ok ... I needed someone to talk with, to express my feelings as jumbled as I feel they are right now, and I know this is a safe place for me to rest my head after a long day. I did sleep (I take melatonin and sleep very well for a few hours) and feel rested and will take one more and sleep and get more rest. Physically I am ok, emotionally I am drained, intellectually I am at a loss in knowing what to do with this newly acquired information. Maybe nothing. Maybe just plod through life and accept the things I cannot change.
Thanks for letting me share my heart. Sorry if some of this makes no sense at all. To some of you, I know it will. I appreciate this site is here for nights such as these when the heart is heavy and sleep cannot be found.
SDPeg
Barb, her caregiver that came on Fridays came to visit her and she'll be back there later this morning. Grandma knows who she is.
My niece is suppose to be popping anytime maybe on Saturday, if not they'll induce labor this Tuesday. It's a sad, but happy time in our family. Sad for Grandma's but happy for my niece. Maybe that's what grandma is waiting for to see her great great granddaughter. God only knows knows that answer. Well I'd better get off of here need to do get somethings done.
I'm praying for all of you here.
Lyn I am worried for you and your son. How does he deal with the situation? He is so young... I had a similar situation in my family; when my uncle got the Alzheimer, his youngest son was very young (around 20), but he managed to keep out of the black hole. He is married now, he is around 30, he has 2 little daughters... (My uncle got married late and he had this son when he was over 50). You seem a very strong woman so I think you will be able to help your son.
Ladee: antidepressants? My brother is taking antidepressants and I don't like very much the state of "false Nirvana" he is living in. I don't know, I am afraid I am going to lose contact with reality. He can do it, maybe I can't...
Vic: don't feel guilty about your pause. Enjoy it as much as you can. Your father can survive for a few days even if he is not clean enough!
Brandy; I can only imagine how difficult it must be to take care of a mother who thinks to have the situation under control but she hasn't. If I were you I would probably let her make her own decisions, because you can't get crazy after her. I left my mother practically 360° of freedom, until she understood by herself that she couldn't make it anymore... After all, it is her life! I know it is difficult.
I post this before losing it.... take care everybody
But they had something on his report that they have never had before. eGFR and staging of kidney disease- it shows that dad is in stage 2 of it. If it drops 1 more point it will be in stage 3. So that basically is what it said. Love and hugs to you all Stormyyyyyyyy
Venting...too much build up for after the holidays when sis & the girls leave. Would like something at least close to normal for awhile.
Need time but not at the expense of my parents.
Not like...dad is basically on palliative care. He was with hospice fr a year untile he progressed...we may be heading back that way soon. Just trying to keep them comfortable and out of pain.
Just real sad right now. Hubby took me it to our little unique town square..we went to the bookstore for awhile and now we are in the yogurt shop...appropriately called Ya Yas. ...still my mind is on my daddy.
Love you all will check in soon. Just needed to vent a few minutes.
Lynn, how long will they keep your husband?. I think you will be better able to make a decision when you have seen consistent behavior. I'm so sorry that the aggression is towards your son; so hard for him.
Everyone has a story and it seems this is the place to tell them as others will listen and not judge. The people here understand and don't question.I am hurting and others here know how that hurt feels. I sometimes feel I can 't go on but I know I have not got a choice. Okay good friends; have a good night and let's look forward to tomorrow.
Ro, you have had one damned long year, many upsets, and in a way I am glad Mama is quite for a little while, gives you some breathing room.... but you are really sounding depressed.... is is med time maybe? Just to help you for awhile? None of us are going to get exrta for killing ourself....
Seeme, hope you are feeling a little better, just one damned long holiday wasn't it!!!
Jam hope yesterday wasn't too hard for you, I was thinking of you....
emjo, not talking about all that cold stuff....
ASG, happy to hear Auntie got out for awhile and was tired when she got back, hope you relaxed for awhile
Lyn, it really doesn't matter what others think you should do, this is your husband, and I have complete faith that you will do what needs to be done... if he is sounding better, that is a good sign... some of the meds work a miracle... you did the right thing by placing him and finding out that maybe meds will help... and all your training does not work with Alz... as I say many times, at different levels, they do not live in our world anymore... they can not be taught or encourged to "reason", and they can not be taught new things... we are the ones constanlty learning new ways to deal with the affects of Alz....
As a rule Sonny is very easy going... but this morning when he was getting dressed and I was starting breakfast, something told me to go check on him.... he already had his shoes on and was trying to put his jeans on.. at first he got a little angry when I said, "let's try this"... so I stopped, put my hand on his leg for a few seconds and said, it's ok, It's really something very simple that we can fix... Ok??? Kept my hand on him for a few more seconds until it passed. Then he mangaged to do it himself... so I was able to say, see!!! You had it all figured out.... but as I said, he is very easy going... I have worked with some , Ruth, that was like your hubby.... I got a broken leg out of the deal.... and she needed the same thing you so lovingly provided for your hubby... That is love Lynn.... not only did you and your son need a break, but allowing him to be observed and given chemical help, it provides him with a better quality of life also.... so it doesn't matter what others think.... you are doing great.....
Ok, gotta go get the Diva some cheese, I am tired of her staring at me.... love and angels to all my friends.....