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.
LadeeM - I hope Cujo is sleeping better. I wish that family would appreciate you more. Take care of YOU!!!
Hi everyone - This might be the last time I post for a little while. Sunday I will be leaving Mom's house for the last time. Bro is coming to help me move the furniture I am keeping to storage. He is still trying to tell me what to do and when. After he and his helper leave I will wait until I can check into the place where I am staying for two weeks. After that I will have a safe place to live down the street from my mom's place. I am also getting a lawyer to look into getting money from my brother for services rendered taking care of my mom and cleaning the house after dust, dirt and mouse poop fell from the attic and cleaning out the shed. I have broken my back for months getting rid of the stuff in the house. Sunday is independence day for me!!!! I will be finally taking care of ME!!! I will be checking in when I can. Please take care you all.
Two, oldest bro and SIL kept asking me if dad had insurance under mom. I don't know. I know nothing. They kept trying to tell me to look for it. Hello??? Do you know how many super typhoons we had since i was age 24? How many floodings we had? All dad's treasures that he kept in his locked chest - got ruined on that last super typhoon. (I have you all know - that I spent the whole night on top of the exercise bike with my feet up so that it wouldn't be dangling in the water. Fortunately, we were able to crank up mom's hospital bed as high as possible and wedged her and the hospital bed in the hallway - with the bathroom door shaking so hard that dad had to tie a rope from the doorknob to another doorknob to prevent the bathroom from flying open and poor mom get soaking wet from the typhoon's wind.) sigh.. I showed them his stub that you give for tax purposes. In end, SIL sat with me and I logged into dad's retirement website. Lo and Behold, dad only has $25,000 life insurance. And mom only has $5,000 life insurance. Bro now wants me to contact the insurance, tell them that mom has passed away last year, send in mom's death certificate, etc...
FYI, when I pulled out my file folder with all of dad's paperwork, I pulled out the beneficiary for his insurance. I told SIL, I have this, waving the envelope. I then opened it, took the paper out, and gave it to her. She looked quickly, muttered 'your the beneficiary'. When bro asked what's that paper, SIL quickly answered that it's nothing. Not what they're looking for.
Hmmmm.. I do believe SIL doesn't trust my oldest bro, her husband. I do believe she doesn't want him to know that I'm dad's beneficiary if he dies. I was surprised that she did that. In the past, when dad was so mean to me, I would storm out of the house, crying so hard into my car. SIL would run out of their place, come to me, trying to calm me down before I speed out and kill myself. As I was crying, I would tell her what happened. She always ends up crying with me. I'm not talking the silent tears. I mean, crying just like I was doing. My brother abused her. I guess she knows what I was going through with dad. When all my sisters was against her when she married bro, I was the only one who was neutral. Too bad greed pops up once in a while. Maybe she learned that from being married to one. I don't know.
Take comfort in that.
Do you know Dad's SS# that is all you will probably need to start with.
Try going online and type in SS benifits and that should tell you what to do next. You may be able to do a lot of it online.Is he over 70 now? There may be quite a tidy sum waiting for him and he should get something between $1-2 K every month from here on in and that should help a lot so go for it.
Pam Steadman will probably have more specific advice.
Your other option is to take him home and employ full time help. if he is heavy and violent a male aide might be the solution plus you need to make sure you have sufficient medication to sedate him when he becomes unmanageable. this is why I am telling you you need to make the necessary plans now while he is hospitalized because you have your oen future to consider. I know this is a very hard time for you but sitting around wringing your hands is not going to solve anything for you or the husband you love. Do you have a friend or family member who can help you with this and accompany you to meetings. You are in such an anxiety state right now to be able to remember anything or make sensible decisions. It is going to be hard and you will end up feeling violated but do what is best under the rules you are given. Praying for you. Blessings.
P.S... dad keeps telling me that I'm a bad daughter, doing bad service.
I didn't know that I was Hired to caregive him. If I was, I sure ain't getting paid for it!
Lav, glad to hear things are settling down for you finally, what made you decide to take bro to court???? More than anything, happy to hear that 'Doormat Lav' , left with the low tide....!!!! Poor Jazzy, probably doesn't know what is going on and just wants all the humans in her life to stop already....let us know when you get settled somewhere... and get internet connection or wi fi, we always want to know how you are doing...... it wouldn't be the same around here without you here.. lots of hugs to you...
Have enjoyed this time off... feeling my energy level coming back up some.... I really believe it's because I got to spend time with my granddaughter... had such a great time with her..... she has a great sense of humor, and laughter has always been my drug of choice..... lol.....
Hope everyone finds one thing to be grateful for today.....love and chocolate !!
Alz isn't just a disease someone gets. It's War. It's an all out assault on every single person involved and you'd better have some strong mental armor to survive the journey.
13 years of alz. 13 years of dealing with what I wasn't prepared for. If someone would have described alz to me years ago the horror it truly is wouldn't have registered. Describing alz is one thing. Nothing that's written about alz in any book can even come close to that living hell on earth. Alz is a seek and destroy beast of a disease. The worst kind of monster there is. It doesn't just seek to destroy it's victim's without mercy, eating them alive from the inside out, devouring your loved one's very soul right before your eyes and there isn't a damn thing you're powerful enough to do to stop it. The beast won already, without even trying and you know it. It's a gut wrenching reality that can knock the strongest to their knees. Alz isn't just content to destroy. Alz likes to torture, not just it's next victim, but every single person that comes into it's vicinity.
And honestly, that's what alz looked and felt like to me. My mind envisioned this god awful beast, something almost alive, because alz has a presence. It has a vibe. It has a personality. It likes attention. It likes to make itself known and it likes to torture and maim from the inside out. If eyes are the windows of the soul, alz was torture for my mom because there was a lot of fear in her eyes when she got to the point where SHE realized, really realized, the horror of what was happening to her. The knowledge that she was losing time. Losing memory. The knowledge that she was losing herself. Losing us. And I knew the same.
At that moment, when you first see and MUST acknowledge that nothing will ever be the same again with the parent you knew, the person, the spirit, the human that you HAD is just GONE....and you know that all you're going to be left with is a BODY.... that's still breathing.....for me, that was one of the lowest moments of my life and when alz really picked up it's pace.
During those years, I saw my mom reduced a lot of times to the level of a wild animal, reduced to nothing more than a body that's being controlled by a machine that's broken and malfunctioning and on it's last legs. At those times, it was almost too much for me to handle. I'd look at my mom, I'd watch her endlessly fidgeting, ending looking for something she could never find, I'd see the fear in her eyes and it brought me to my knees like nothing else. There was nothing I could do except hug her. That's it. Alz is looking into someone's eyes as they die in fear and horror. And those around can do nothing but watch it all happen, are forced to watch.
I've seen things I wish I'd never seen. Never had to see, because alz didn't exist. I wish a lot of things, but only the damn truth is real. I dealt with things I wish I'd never had to deal with. In my mind, when I'd see what I wished I'd never see, when I dealt, again and again and again, I wanted to break, to scream, to howl at the freaking moon in absolute and total grief, frustration, anger, regret, sorrow, you name it, all assailing me at one time....but I couldn't. None of us can. None of us, these caretakers, are allowed to break. We can't afford to. We can't afford to give into depression no matter how depressed we may be. We may wish we could walk away because the weight of alz is so heavy it becomes physical...but we can't. Someone has to do this job, sometimes there's no choice. I don't know a lot of people that can afford $8000 an up NH's.
I still get nightmares about this whole journey. I'm embarrassed to admit what a toll this has taken on me, on so many freaking levels. I'm embarrassed to admit how absolutely and totally weak and tired I feel atm. I'm pissed that the whole thing has gotten to me like this. I damn myself for it, telling myself that I'm a wuss, a pathetic pussy that couldn't deal and now I'm cracking like an egg like a little pansy....
I've always been glad to be a strong person with a strong survivor instinct and strong will...God knows, and you guys do, that to deal with a narcissist, and my mom was one, you've got to have steel somewhere to retain your sanity around complete insanity. But alz knocked the wind right out of me. I want to deny it. I want to tell myself that I'm stronger than alz, that I'm not going to allow this thing to win and beat me, too...the fact remains that I'm worn the hell out. Completely wiped out. That's what I feel like right now. It's like I held my breath, suppressing all that haunts me now and after 13 years I'm finally free to think about it...but I don't want to think about it. But there it is, in my face, images of alz that I've had branded into my brain for years but have never really looked at, popping into my thoughts when I least expect it. When you're actually in the situation, dealing with the patient, dealing with all kinds of really awful things associated with alz, you go into a kind of auto pilot. On one level, you're absolutely shocked to the core, horrified, at some of the things you deal with when you deal with alz...and on another level you know you've GOT to deal, even though you wish to God you didn't have to, and so you do. You push your thoughts, your feelings, your emotions to the furthest reaches of your mind and you just wade in and deal and face it because there really is no other choice.
I saw horrors. I was bombarded with horrors. I wish I could sit here and pretty up alz. I wish I could honestly say it really wasn't that bad. But I can't. Because alz really is THAT bad and worse.
And it's done something to me that's almost scary. It's turned me, along with life next to a narcissist, into a recluse. I don't want to talk to anyone. I don't want to deal with anyone. I get sick and tired of listening to people pissing and moaning all over the internet about stupid little shit and playing the victim card. I have no patience, no tolerance, for people that are determined to be miserable when they really have no idea what true misery really is. A group of people on another site I'm on got into a fluff and a battle over the world 'girly' being used to describe pink. Some users were REALLY offended and outraged that someone would give the color pink a 'girly' label....after all, BOYS wear pink, too! Really? You have the energy to rage and scream about a word. One word? Well, as far as I'm concerned, if people have the luxury for the energy it takes to get that worked up over a single word, frankly, I don't give a damn how offended they are, they don't get much sympathy from me. I get tired of people whining over nothing, taking all the little things for granted. I'm tired of this world and the people in it. I don't want to do anything for anyone with the exception of the people close to me. I'm tired of this overly PC world, where everyone has to worry about offending people with every word they say. I don't have the damn energy to worry about other people's stupid dramas. I don't want anyone taking anything from me, asking anything of me, wanting something from me or having expectations of me. I can't stand the thought of it. I want solitude. I want to retreat from this crazy world. After living under a rock for all those years, it feels as though I've stepped onto another planet and I don't recognize the inhabitants, don't know them anymore...and I don't want to. My mom's care took everything out of me. Including my ability to give a shit about anyone else, especially people that do nothing but grip and complain over what amounts to nothing. I don't have the inclination, the energy or the time for the bullshit of the masses in society. I just don't want anything to do with any of it. I don't want people expecting shit out of me at this point. I don't want to compromise, or negotiate. I have nothing for anyone. And sometimes I don't think I ever will. I can't even consider a relationship or a man in my life because I don't want to....give...anymore. And I know this is wrong. I don't like it. But that's exactly the way it is. I've become selfish and reclusive. And I can't seem to find it in me to apologize for it. And I can't see it ever changing. That's scary, because I'll be alone and that's wonderful, because I'll be alone. To me, solitude is peace. And I need all the peace I can get after this h*llish journey.
I'm hoping with enough time all of this, all these emotions and some of the lousier memories, will simply go away.
Take care, all of you. Get the breaks you need and the more of them the better. People need away from alz. A lot.
It didn't end there with her being mean and nasty to other residents, causing chaos, screaming tantrum phone calls every day, finding a new home for me and my animals, sorting, packing and moving, clearing the old house and getting it renovated for sale (in mid winter (hobbling on a cane with a broken toe).
The past 5 years have been a total nightmare but things are improving. I'm still renovating the tiny house I bought out in the country and my mother (88) has no fight left in her. I had a list of outside to do's for yesterday but it rained (like the monsoons!) all day so I went into town for groceries. As usual, I stopped in at the NH to see what she needed. She can't speak much and it's hard to understand what she does say but she's totally calm with a smile and look on her face like a small child. She's never been happy with anything in her life but she seems to have finally found some peace.
New to this area, I'm gradually getting to know a few people but, like you, I mostly keep to myself, totally avoiding anyone who's negative or drama. I have one house across the road - bible thumping nutters but they keep to themselves and I ignore them - then nothing but fields and forest with the occasional house or farm for miles. Suits me perfectly and I'm starting to heal.
Caring for someone with physical issues is hard enough, but dealing with mental issues on top of it 24/7 destroys you. It's a long road back and I hope, in time, you will start to feel better. Dog Bless you - and, no, that's not a typo :)