I remember when I read a lot of the posts in the early days of this website, there was much discussion about getting angry and shouting at the one we loved, the one with this AWFUL disease, the one who can’t help themselves in spite of fact that it seems like they SHOULD be able to.
Well, today I lost it. I shouted, I ranted, I threatened nursing home placement, I reasoned. I asked why she hates me. I said this is the only thing I insist on, why was she refusing that one thing. And I hate myself now. Me, with my great litany of she’s doing the best she can, I’m doing the best I can, we’re doing the best we can. And then next thing you know I start swearing like a teamster. Obviously not doing the best I can. Not anywhere near the best that I can. And I know that because of how I feel when I am doing the best I can. And I don’t feel like that now.
The issue at hand, the one thing I have always insisted on is that she take her seizure medicine. Because I can't take her medicine for her. It is liquid already because back at the end of last year she stopped being able to take pills.
As penance for not being able to perfectly ignore what this terrible ordeal is costing you, I completely forgive you.
You're confused about what doing the best we can means and what being perfect means. Perfection is heartless but you love her and this hurts like ****.
You won't shed a tear for yourself because you need those cycles. It could only ever come out as a blow out. Look up the theory of volcanoes. Pay special attention to what causes them. The pressure builds up until it breaks through.
Apologize. Tell her you love her so she can feel it. And continue. The pressure isn't just the increasing work. It's the losing of your other half in a most cruel way. That also splits into what she is losing right before your eyes which HURTS and what you're both losing which HURTS and somewhere a step back is what you are losing and that also HURTS!
This is all spiritual if you will. Reactions from you are the price of the hardship. There was weeping and gnashing of teeth in among the great deeds done. Most people allow that would be so.
You are hitting your breaking point. We can only go so far before we all hit a breaking point. You are human and please don't beat yourself up. You are one person doing the work of many. Cook, nurse, cleaning crew, shopping, paying bills, etc. How can we do this all and not get to the point of losing it. No days off, no minutes off!! We are on 24/7/365. Who on this earth can do that!!
Take a step back and give yourself time to regroup. You ARE doing your best, and sometimes our best includes losing it. We are dealing with Alzheimers, where the rules change day to day. Who can keep up with that.
Be kind to yourself, and if she will not take her meds, wait a while and try again in a different way. You can do this, (((Hugs)))
Wolf and Blue have said it so well, there's nothing l can add except I've been there. It is devastating. Towards the end, I realized there was nothing more I could do: no amount of trying or encouraging. I had to give up and let it go. You stay with them, but you no longer fight it. Alzheimer's wins in the end. I found that a very bitter pill to swallow.
Totally agree with above comments. Although we all try our best none of us are perfect including you. Give yourself a break regroup and carry on but watch for the signs in yourself. As Blue said it appears you are hitting the breaking point and as we all know you have to take care of yourself. As you have said lindylou "not doing the best I can". Well I think you are doing the best you can you can only take so much before you snap. So Please don't break but take a break it would be the best for both of you.
If it were me in your situation what would you tell me to do? Be honest, What I am saying is you need to follow the advice you would give to others.
I am standing there with you right now giving you a great big hug you need that right now.
Will she take it if you sneak it into her mouth using an eyedropper sort of thing? That's what they used for the morphine when my husband was dying. (For all the good it did).
Going back to Elizabeth's very apt "black hole" analogy. You are getting sucked into it. In such situations, the difference between your very best and your second-best does not usually have a corresponding benefit to the patient. Anyhow, I hope you can forgive yourself. We are all with you.
My dear Lindylou, I.am with Wolf. I completely forgive you. I must admit that I had to smile when I read of our Lindylou swearing like a teamster. You go girl! The other day I was reading about a memory care unit and how they make sure to treat our loved ones with the dignity they deserve and they keep them actively engaged and always treat them with respect. I started to feel guilty for blaming my DH and being so angry with him so much. UNTIL I realized that I've been making it all about him for HOW many years? No one around here treats me with dignity or respect. People second guess. So I forgive myself when I lose it and swear like a teamster. Hell, 15 minutes later it is a brand new world for him anyway.
Early on in my journey my nurse friend said when her patients won't take medication she leaves the room, passes out more meds and comes back. Before she goes back in the room she.tells herself "I am your favorite nurse and of course you are going to take the medicine this time." And goes back in with confidence. Sometimes it might take several.tries. If she.went back in without that confidence a battle.was more likely. I don't know if I said this right. I use this technique quite a bit. I also "lose it" far more often than you do.
LindyLou, I have been there. I couldn't believe the words that came spewing out of my mouth with such force...I couldn't stop it. I screamed like a banshee (not sure I ever heard one myself, but I've read!), in fact so outraged that I burst a tiny vein in my eye....that was it for me. Dan was stunned, more confused & within 15 minutes didn't even remember something had happened.
Forgiving oneself is a hard thing to do, but talk to yourself from your heart...you will be able to find that forgiveness. Like Rona said, what would you say to someone else in this situation? Think about it.
I can't really add anything to what everybody else has said so well--but will say that I screamed at my DH a couple of times--told him I was going to put him in a nursing home--and then felt horrible beyond words at the look of sheer terror on his face. How could I--a nurse for over 40 years and a fanatic about treating patients kindly at all times--with dignity and respect--a touch of humor--no matter what--How Could I Yell Like That and Be So Mean!!!??? Fortunately he forgot about it almost the next minute--and it just reinforced for me that I must do better--keep on keeping on--impeccable, loving care no matter what. (Yeah, until I keeled over and dropped dead--but that's what it's like for us, as we all know.)
So for heaven's sake give yourself a break. I know the seizure med is of prime importance, but sheesh. You can only do what you can do--give it a rest, and try again later, I guess. Maybe a different route of administration would help, as Myrtle suggested. You could check with the doctor or the pharmacist about the options.
I just read an essay written by a man about his recently-deceased father. These words reminded me of us:
"How, above all, [my father] strove over 49 years of marriage to cope with the mental illness of my mother, June. This constituted, as he once wrote to me, “the deepest and most sacred element of my life.” He was wounded and, in time, withdrew. Each of us carries a measure of mystery; each of us faces situations in which there are no good choices; each of us, untying the knot of a life (lived forward, like all lives, without the gift of hindsight), will become wary of casting the first stone."
Roger Cohen, “Sons Without Fathers,” New York Times, July 14, 2017.
Hi Lindylou, hope that you are feeling easier today about your (very understandable) meltdown. Today is a new day so just go forward. We are with you all the way, take care.
Well, it took me quite a bit longer than Wolf to forgive myself for not being aware of the toll this disease is taking on me. I actually have been saying to folks that I know the cost of caregiving could be ever so much worse emotionally to me than it is, and that, all things considered, I was/am doing better than might be expected. On the other hand, there could be, and apparently is, as exposed by my recent explosion, some (or perhaps a great deal of) denial in my proclamations of the true toll.
What I am able to do, for the most part, is to present a calm, non-anxious front to my partner, as a means of making this disease easier on the both of us. When we face the difficult with success, we laugh. Laughter of relief, recognizing the absurdity of it all.
Theory is this: if I present as calm, and act as calm, I will be calm and so will my partner. And there is a great deal of truth in this theory. The inverse, for the most part, is also true.
So, what happened? My partner has her mouth full of liquid medication and juice and is REFUSING to swallow it. If she REFUSES to swallow it, there is a potential for SEIZURES, as well as a mess all over things. It was hard enough to get her dressed in the first place. And how do I remeasure her carefully measured medication when I don’t know how much she’s had? I LOST IT as described above.
I HATE the SEIZURES. With all my heart. They are horrendous, not just to my partner, but to me as well. I hate them nearly as much as DEMENTIA. I have to put on a calm front with SEIZURES that I am not feeling at all. I have to hold her, tell her everything will be all right, that now we are half way through, they will end soon, that six more minutes is not the eternity that it feels like. I do this because she is fully conscious through out them, whispering thank you to me for each reassurance I give her. But at least with SEIZURES, you can, for the most part, prevent them with medication. So I had a deal, in my mind. My partner will take her medications, and I will deal with everything else in the dementia book.
Only………… After a long talk with my partner’s MD yesterday, I learned that my partner is NOT REFUSING to swallow her medication. She is FORGETTING how to swallow at times. And verbal cues and gentle touches might not work at those times. And then the doctor asked me whether my partner was choking on her saliva. OMG. I answered, “not yet”.
Think I’m grabbing my bathing suit and towel, packing a few sandwiches, and a bottle of wine to share and going to the virtual Cottage on the Lake. Anyone else who needs respite can join me today and tomorrow on that page.
Thank you to all my faithful supportive friends. And thank you for your suggestions and love. Thank you for sharing your "losing it moments". Thank you for your forgiveness. I needed to hear it. Can’t make it without you.
Search "stimulation of swallowing reflex." Even if you are already aware of this information, Lindylou, others may find it helpful. As your physician pointed out your partner may be beyond the point of stimulation for swallowing.
You have the best attitude. Blessings to you and your partner.
The doctor made a good point about her forgetting how to swallow. I didn't think of that when I posted upthread--should have remembered. That's one reason Alzheimers clients without advance directives can end up with feeding tubes.
The lake sounds like a good idea today! And Lindylou, you are doing just fine. This disease will chew us up and spit us out--it is just so horrendous and evil--just relentless...so harmful to the caregiver as well as the patient...sigh...but we know that.
I searched dementia swallowing difficulties. Here is one link with some interesting stuff and tips. https://www.unforgettable.org/blog/why-does-dementia-cause-chewing-and-swallowing-problems/
It mentions a Korean study that found people with late stage Alzheimer's have more difficulty with liquids. Late stage vascular people have more difficulty with solids. People with Fronto...sometimes start eating compulsively, often sweets. Or they eat very fast cramming in food, often leading to choking.
A couple places suggested offering smaller amounts and using a thickening agent for liquids. One mentions a special cup that allows drinking while keeping the chin down. And don't mix solids with liquids.
Thanks for the link, bhv. I just read it. I put juice, thickener, and sugar in her liquid meds to make it more palatable. I did freak out when she wouldn't or couldn't figure out what to do with the medication already in her mouth. But this does not, thankfully, happen all the time. At least not yet. And I certainly won't explode over this issue again. But Wolf''s idea that we do at times become over pressurized pressure cookers, or as he said volcanos, nevertheless is true at times. Just hope I remember to punch the pillow and sob when by myself, rather than spew the ugly words I have to regret later.
I remember earlier on in this disease, when I would mention that I forgot something, my partner would say to me I am so relieved that I am not the only one who forgets around here. Well, Alzheimer Spouse friends, I am relieved that I am not the only one around here who has lost it, spewed vindictive and sworn like a teamster. It happens, even when we wish it wouldn't. Thank you, friends.
Last January my partner would be walking (with assist) and just suddenly stop. Her doctor said she was in the in-between stage of knowing how to walk and not knowing how to walk. This turned out to be true. Four months later she was not able to walk at all. Now we are in the in-between stage of being able to eat and drink and not being able to eat or drink. We are in what I think is our seventh year of decline due to this horrendous disease. Each piece of it is excruciating.
Hi everybody, I am new to this forum. My spouse was diagnosed 2 years ago, his Sundowners, the fits of rage than becoming his near normal loving self. I call it Dr. Jekyl and Mr Hyde. Never knowing which one he is gonna be, but the endless chatter and constantly talking to himself, Full conversations with the plants, and anything around him, knowing there is not another human in the room. That has had me at the edge of loosing it myself. As I have read several of the different discussions, I no longer feel alone. His condition became real apparent when his Mom passed last year from this ugly disease, than we lost his younger cousin also from this monstrosity of a disease. 6 months later, I got numb to some of his rage, but now his full conversations with nobody in the room, that is pushing my buttons. I know that one day, when those stop. I will be wanting it back, any type of noise from him. I am thankful I found this forum, I can tell I will visit often
Welcome to the group no one wants to join. You will find a great bunch of men and women here who support each other. The search function is always available at the top of the page. Lots of tips available. There are some here who have lost their loved one but they stick around to support those of us in the trenches now. (They have an asterisk next to their name and sometimes a date) So many times they have helped me find a way to move forward. Again, welcome.
Litbit64, welcome to the site. We are here to support you and help you along the way, whether you need to ask a question or just tell us about your day, whatever kind of day that might have been. I would encourage you to also go to the "Introduce Yourself" thread and tell us about yourself so others know you are a new member on this site. Again, welcome. You are not alone!
Hi, Libit64...welcome (?). Always seems like such an odd thing to say. You will find much advice here & great people who really have walked in your shoes!
Hi Libbit64. You will find this a supportive and friendly group of people who really get it. I tiptoed into the website about a year and a half ago and have found the emotional support and practical support I need. And by throwing out my difficulties, experiences, and problems, I do not feel I am burdening any one person with "too much information". Here we build each other up, make suggestions, and just let each other know we care. Glad you posted and look forward to hearing from you more. Log in and start a page about people talking to the plants..... You will find others here who will relate. I have been grateful I started this page, I got good suggestions, found out I was not alone, and was "forgiven" before I could even realize that I needed to forgive myself. By having read this page you realize by now that you are not failing by feeling angry, and you are not alone if you suddenly lash out. Because you are not. Thoughts, prayers and hugs going your way.
What a great way to put it. We tiptoe in. Exactly. It is so scary. All the commercials and facebook posts and newspaper articles allow people who have no clue to.pretend that.being a.caregiver is a warm and fuzzy thing to do. About once a month there is a facebook post like "If your husband was disabled would you.stay?" And everyone who.has no clue chimes in saying "Of course". Or the commercial that says 'He took care of me for 30 years. Now it is my privilege to care for him.' Ending with a big smile for the camera. Well not so much. In the newspaper they talk of putting people in jail for failing to provide good enough care. While there are no rules and your spouse is an adult who you can't force to do anything.
Last night after a weekend of yard work that he should be doing and preparing his meals and cleaning his bathroom we came inside to eat and he threw my drink down the drain. I couldnt believe how stupidly bad this made me feel. I couldnt even make myself pour another. Went upstairs to allow myself to cry for a few moments alone and he followed me! So there I am crying over a spilt drink and he's asking me what's wrong. I can't even speak. This guy who can't remember anything keeps.after.me to explain on and off for more than an hour. What a ridiculous night. Put him to bed twice and he kept coming downstairs trying to get me to come to bed with him. Finally I relented but I cringe at every touch. He keeps patting my shoulder saying "You're OK". I am so far from OK it is NOT funny.
Well we got through the night and now he is all.smiles. what fun. A brand new day. Brand new world. I get to go see my girlfriend at 3pm today. What the hell am I going to do til then? Laundry.and cleaning and changing his tv channel I guess. I need a drug that will turn me into a zombie for the next how many decades will this go on for?
Thanks for listening. No don't tell me I need respite care. I know I need to hire someone to come here.and do something. I even know who to call. Interviewed them a few months ago. Working on it.
It's raining! In Southern California. In July! It's really raining too. Not just your average drizzle. Better check the windows.
My pet peeve is those postings of all the things you should never say to someone with Alzheimer's or dementia. I am no saint and no way would I even try to be angelic enough to follow them. I was trying to find them since they show up at least once a week but have not found them yet.
Here I am again. Got unreasonably angry about the remote control being missing. Finally found that and the phone went missing.Totally unreasonably demanding he find that. Shadowing getting worse. I am so jumpy. Startled way too frequently. He wouldnt leave the kitchen the other night so I just didnt cook. Tonight I managed to put supper together. But lost it when he poured my drink into his water while I was washing the dishes.
Lost it so badly I went and cleaned the awful mini blinds in the kitchen window! Do you have any idea how angry I have to be to be cleaning mini blinds??? At 7pm? Then he kept coming into the kitchen to watch me cleaning the mini blinds! Several times I just stood there glaring at him and he decided it might be a good idea to go in the other room. Didn't last long though. He's baaaaack.
I tried telling him, calmly, that it was making me even more angry when he stands there watching me work. He just stands there with an idiotic look on his face. Then tells me some story about how good things are. The only thing that keeps him still is if I go sit in there with him and put something idiotic on the tv which he doesn't even understand. . W. T. F
Yes I understand I am supposed to be compassionate and loving and smile and god knows what else other than angry. I. Can't Get There ........... Then go up to bed with him and he actually thinks it would be a good idea to Cuddle. Are. You. Kidding. Me???
Well I finally got the form signed by the doctor to try adult day care. Will call them Monday morning. Perhaps if he is gone for a little while.......
No I haven't hurt anyone. Now I am kind of numb. Trying not to feel anything. How do these people do all the lovey dovey, oh you poor dear man, how can I make your day brighter my dear? Well I lost it and Actually I am not interested in finding it.
bhv - I'm sorry to hear you're having such a difficult time. I can certainly understand your frustration..... I use to scream into a pillow.... I know sounds dumb, but it helped... (a bit) Getting away is the one thing that will help the most. You need respite - you need time away from him. Having him attend adult day care is necessary for your sanity. Also, can you get someone to come in to spend a few hours with him? When you go out, you need to be with people, even if it's just one person. Carrying on a conversation helps you forget the craziness - well at least it did for me - alone with my thoughts was never good for me.
My husband did not want to go to day care. I had tried a few years earlier when he really wasn't ready - he was mad at me & had never forgotten it!! He had forgotten every thing else, so why remember that?? I did get someone from the Alzheimer's Society to come in the afternoon for 3 hours. Started with once a week then I increased it to twice a week. He didn't really like it, but I needed it. I couldn't leave him alone, so my outings were limited. What also helped me relax in the evening was a long bath by candlelight. My candle was lavender scented & also used lavender Epsom salt. The bathroom smelled so good - dark & quiet. He gave me my privacy whenever I used the bathroom - he respected that - thank goodness. I used the bathroom a lot to cry, so he got use to seeing me in the bathroom. All he would do is knock & ask me if I was OK.
When I was cleaning I use to give him my dusting mitt & he would clean here & there. Kept him busy for a little while. Hopefully, you're able to get him into day care.
even if he doesn't want to go, send him anyway. Even if there is stress to get him out, you will be glad when he is gone. Do you have to take him or will someone pick him up? If you have to take him and he fights on going, tell him you have a meeting to attend just like the last time.
I am proud I did not loose it yesterday. I finally got around to fixing the sewer line so when I want to move it will be easier (hopefully). Because the size they made the whole the sewer lines exits through the bay, we had to take the end off to remove it. Yesterday I cut the line just under the MH and put connections on so we can disconnect there. Hopefully I got it close enough to it won't dangle around hitting the exhaust when driving. Of course he wanted to help and I let him. A half hour job took 3 1/2 hours but got it done. Today I am stiff and sore from crawling on the ground but at least it is done. My worst times when I wanted to cry was when the old part we had we couldn't get into the sewer hose so had to go buy one that threads in; the other was when we could not get the two parts to connect up because the way they connected - we couldn't get them to lock in. So we took the connectors out of the hose, worked on locking them, found it took two to do it but finally got them to lock easier, put them back on the hose, connected and pulled the gray water to make sure nothing leaked.
Hang in there BHV - you will get your breaks too. Like my husband, he may enjoy the added social connection.
Wow, Charlotte, what a job. I am in awe. Thanks for the support Nicky and Charlotte. I am somewhat calmer this morning. Couldn't sleep and read a.book last night. It is young people in NYC for the summer. Very much like my niece who just moved there last year. The characters talk like my niece. They are falling in love, dreamily looking into boys' eyes, can't wait to see them next, can't bear to be apart. I had memory flashes of dating hb, riding around in the el Camino, listening to "Watching Girls Go By", getting married on the beach, thinking we would be ok. I want to scream at my young self, DONT DO IT! I can't remember being that person. I have to find a new person to be.
Bhv, i'm with Charlotte. Make him go even if he wants to not go. Tell what lies you need to. Doctor's visit, meetings, house has to be exterminated (ha ha), gas company is doing repairs to the lines so we have to leave..... I'm sure you can be creative. Things will still be hard, but no so hard if you've had time to rest and time to fill your soul. And listen to Nicky when she says you need to be with people. When you are with them you can talk a little about dementia and a lot about the other things in life that you love. SURVIVAL. Keeping you in my thoughts.
Hugs, Lindylou. Being with people is sometimes tough because I have a hard time shutting up since I don't talk anymore here at home. Lunch with Patty works. We both need to get away from ill husbands and find a little joy. But the very first thing I am going to do is golf. By myself.
That's great bhv if you can go golfing. Anything that you can still enjoy & it's outdoors, even better.
It's been difficult for me finding things to do & enjoy them without my husband. We were always together & having moved to a new area, has made it even more difficult for me - where to start? Starting over in my sixties... I thought my sixties would be smooth sailing, even though we moved. Just assumed we'd keep doing everything together with the added bonus of having family close by. I was so wrong!! As soon as we moved Alzheimer reared its ugly head. It had been lurking & waiting....
Charlotte, I can't believe you're able to do all that!! Congrats! I know I couldn't.... I wouldn't even know where to start??
Nicky - if you think about we all are doing things we thought we never would or could do. We have lived in the MH since 2004, so we always did a lot of the maintenance together - I would do the thinking and reading - he would do the manual work! Like you, we did almost all things together. So finding things to do that I like by myself has been hard and weird at the same time. It will be 47 years in May, so as so many know, that is a long time of doing together.
Yesterday there was a post by the Walla Walla VA about a couple being buried together after 60 years of marriage. They died within hours of each other. Every so often we hear stories of couples that just could not live without each other dying close together. Not me - either I go before him or long after him.
Charlotte, you're right I am doing things I never thought I could ever do - doesn't mean I have to like it. None of us are liking it..... Like you, we've also been together for a long time - total of 48 years - married 45 years in July & dated for 3 years while he finished university - started dating him when I was 19 years old & he was 20. It's amazing how we can get use to a person & never really put much thought into living alone. I always knew I wouldn't like being alone, but foolishly assumed that we would be in our late 70's or maybe early 80's before one of us would pass away. He hasn't passed away yet, but I'm still alone....hadn't assumed I'd be looking at my future alone while still in my 60's. Sure seems like a long time to be alone.....
In the past I've also heard of couples dying within hours or days of each other, but they were usually in their late 80's or early 90's. To be honest, I always thought since they were that age, they were lucky that neither of them had to feel the pain of grieving for very long or have to adjust to living alone. Now, since I'm only in my sixties, I don't intend to die within hours of him, but I also don't know how long he will live.
All of y'All, I don't blame you for the anger and loosing it. I have had the anger flashes but so far have been able to control the loosing it. I am twice her size, loosing it could be dangerous for her. I can be gentally firm, no lovey dovey here. I worked hard to control my anger when I realized you hurt your self more than them whoever them are. Homicidal thouhts towards brother-in-law would lead to more hurt on me.. I just do not know how you ladies do it. Please hang tough just a little longer and take care of yourselfs.
seems lately I am getting proof that depession, anger takes it's toll. Three years ago, it was just Bel Palsey, TIAs, blood sepsis, Out of controll Hypertension. Managed those. LAst year kideney diease, last week, liver, platletss real low, cellulititis, and what not. Being a caretaker is tough. And I thought I was in control. You have got to take care of your selves. It is like a war zone and your dodging bullets and there is no peace accord. And, Next to you ladies, I have easy. Other recent conversations is leading me to believe that DW may have VD not AD or something else. wed she caled me hsr first cousin. That last 3 min.
She might have a combo of AD/VaD. It is not uncommon for there to be mixed dementia. Also, is the cancer into her brain? That will also add to her problems.
You keep saying we women have it harder than you, but not really. It is hard whether you are taking care of your wife or your husband. It is very emotional for us all when it is your spouse - different than when it is mom, grandma, aunt, sister, etc. which is the reason Joan started this site. It all stinks. It all sucks! It all hurts like hell.