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.
I've been lucky enough to find a handyman, muscle helper who is inexpensive and lives close by to do the heavy stuff I can't. The little house is all electric but I'm planning on installing a wood stove before winter. Starting to grow veggies - tomatoes, beans, beets, spinach and carrots this year - and the berry bushes are fruiting well their second year.
Apart from an elderly uncle and a couple of distant cousins in another country I have no family. When I visited my mother yesterday she was in awful shape and said "I'm going soon", to which I replied "Oh, aren't we just the little ray of sunshine today" which made her smile but she's right. I don't think she will make it much further. Though I've always had dogs and cats, I've lived alone and done for myself most of my life. We've never been close, far from it, but when my mother passes I think somehow I'll feel like an orphan. Weird isn't it?
The lessons I learnt at a very young age were that you can never go back, you can never re-creat the life you once had. You have to always move forward and it will be a struggle but you only have yourself to depend on, No one else can fix anything for you, yes you will slip and fall, make mistakes and poor choices but through it all you have to be true to yourself. Find that path through the woods, it is there even if you have to use a machete to find it. Friends are some of the most wonderful gifts we can recieve and give to others. I do have family a husband of 51 years who has been far from perfect but truly loves me and three wonderful children that I know would all care for me. I also have true friends nearby who are always there for me and have helped me out many times. Now I am making new friends here on AC. We can all manage without family and in some cases choose to have little contact with other humans. Our society is not built on family values in many cases and mobility discourages close knit groups these days.
I have a great interest in the self sufficient lifestyle and try to practice many of the skills but especially now in my later years realize being a loner would not be such a good idea. Heat with wood - wonderful, but I can't chop wood anymore. Even line drying my laundry has gone by the wayside this summer. Did make some jam yesterday from fresh peaches but did not stand over the hot stove stiring till it reached setting temperature. No I used my new automatic jam maker that does the whole job in 1/2 an hour with little supervision.
So what has all this rambling got to do with uncaring siblings and depression? It has to do with finding your own place in the world and living where you are at now. Wishing for an old life or one free from ailments is simply not going to happen. Realize the limitations and try to find joy in simple things that please you and let those bothersome family members find their own reality. It may come as a shock to them when they look back at their empty lives and find they have no one to care about them. The road is long and hard but you can only do your best. Blessings
I'm glad you're doing better...
I can relate Book, to when my brother died.... know when I found out... the day of the funeral..... I know that was a turning point for me, just looking at them for who they are in the world, and knowing I did not want to be like them in any way.... my 'divorce' from them started then.... to this day, none of them understand or care why that upset me..... speaks volumes about THEM doesn't it.....
Red, I am soooo sorry about your accident.... can not imagine the pain during and after..... I was cringing when I was reading what it took to get it back in place..... guess the treadmill will be replaced with stationary bike.... something that doesn't move.... let us know how you are doing.... and just take it easy, those muscles and tendons take a long time to heal......like MsV said, gentle hugs.......
Booklvr - Thank you so much also for what you shared with me. It also means more than you know. I feel so badly that you are going through the pain and disappointment I (and others) are going through here with their siblings... It hurts badly. I was also trying (for decades) to hold on to my siblings as they are/were my only family. I'm now starting to 'learn' how to detach... mentally... The difficult part is the constant 'reminder' of the pain when they call my mother (who lives with me) and they all get 'together' and leave me out... I am trying not to get sick... I never knew this kind of 'hatred' existed in families... I'm trying... Thank you for being here for me...
You are my sisters on AC... God Bless you and take care of you.
When I was a young orthopedic nurse one of the surgeons showed us how to reduce a shoulder dislocation. You laid the patient on the floor and the Dr lay beside but head to toe. He then put his foot in the axilla and pulled and twisted the arm back into place. Doing it that way gave him a lot more strength stabilizing the shoulder with his foot and getting the traction on the arm he needed.
As far as the bra is concerned let the girls have their freedom for a few weeks after all you are wearing a sling and won't be running so no one will know except you and hubby. When he is dressing you always put the bad arm into the sleeve first that way you can bend the other to get it in. I expect you knew that from helping MIL. Don't be afraid to use the pain meds but watch for constipation. Of course you knew that too but others may not. Don't worry about a thing everything can wait allow yourself to be waited on the only exertion permitted is posting on AC so we will be waiting for lots of updates. Take Care. Lots of very gentle hugs
Chrissy, I know about the red tapes and phone calls with no one calling back. When mom was close to death's door, we tried and tried to get the doctor and hospice. But no one wanted to budge. We Had to Follow Rules. Mom was close to dying, the ambulance ride on our dirt road, to transfer her to/from the gurney, etc.. would be too much. We already knew that it hurt her so badly when we turned her on her side while changing pampers. In the end, because NO ONE was calling us because they already told us what to do (No Compromising), we called Adult Protective Service. The man said this is not their jurisdiction, what did we expect from him? Older sis (very good at verbal arguments) shot back - help us find a compromise. Unfortunately, mom died before that happened. .. Do you know what pissed me off???!!! Mom's Health CASE WORKER for both the clinic and the hospice actually had the nerve to call Me at work. This person who did not call back or anything, had the nerve to call me to ask how my dad is doing. I was very cold with her. I told her to call him and find out. Then I hung up. She never called dad. She knew he would have blasted her. So, I sympathize with you and the runaround you're having right now. You might have to just go in person and make your complaints. Or email it directly to him/her. What you just wrote now, write it to him/her. {{chuckling}} My work was always my escape from caregiving - from dad's mouth. Ugh! Just this morning, I was thinking, "I can't wait to go back to work tomorrow!"
Heart2, every time your brothers do this to you, it will hurt you but it will also harden you if there is any eventual betrayal. I'd start learning to detach from them emotionally now. This way they cannot hurt you as much as it is now.
This was an advice given to me here on AC. I liked it. So, I copied and pasted it on my file under Detach & Boundaries. I'm still working on it. =)
*** Detaching is separating yourself emotionally, socially, spiritually, even physically from another person. - to be indifferent, remote from them. It does not necessarily mean you ignore them, just that you don't let their behavior affect you so much. ***
She fell and broke a hip about 10 years ago, nobody thought she would survive that. Then developed breast cancer and a double mastectomy about 5 years ago. Nobody thought she would survive that. She was in the hospital about two years ago, couldn't walk found it was too much calcium, nobody thought she would survive that, or be able to live independently again. But she did, she is a fighter. Lost her husband to prostate cancer 35 years ago. This may be her time and I am so sad about so many things.
I am not going to say talk to your counselor, get on some meds, ect.... you already know all of that..... but I can tell you what has saved my life and my sanity more times than I can count...... I do have some of the most awesome friends on the planet... some here on AC, some in real life..... I stopped having anything to do with my family so long ago, can't remember when it was.... I learned that it didn't matter how much I was 'nice' to them..... didn't matter.... some of it is because they are incapable of it, and some of it is because I has
expectations without stating my needs......
don't get me wrong... I would not state my needs to my family..... that would just be stupid. But I do state my needs to my friends.... and they are present for me......I do get weary of walking this road.... and have been and still am as depressed as you are now....but I would never give my family the power to destroy me and let them be 'right'..... I'm too stubborn for that, thank goodness....You may need to be appreciated or validated or what ever your needs are... but to keep wanting it from people who can not or will not give it to you is not going to help.... we are here for you.... no, we don't get to set at your table and drink coffee with you and listen... but we are here, and we do listen....we do understand.... and you are not alone.... you may not be getting things you want or the way you want it.... but you do have friends here... utilize them....... sending you prayers of energy to do what you need to do to take one small baby step forward.... we do understand...
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 :)
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.
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.
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 !!
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!