Chris was 82 and I think that changes so much. I know I would feel so angry if I was Liz !!!
Sorry for you, Kevin. I hope I don't sound unsympathetic but the price we pay for being loved is that we are the safe bet to dump on. She knows you really know her.
You are right, for three years she worked me over, in between being so very loving too. Yes, I was safe person on which to vent it.
I can deal with her anger, but she has taken to trying to hurt the staff...
I'm so frightened the home will terminate the placement or increase the fees, for extra staffing, again, to those levels which we cannot really afford.
I'm so sorry, Kevin. I didn't have any of this with Chris. I hope they are able to cope. It must be so distressing to see her being consumed by these behaviours, so alien to the person you know and love.
Surely this most challenging behaviour is funded by CHC ?
Yes, we get CHC, but the home is an expensive one and we top it up. They don't really do dementia and behaviour issues. So she is jeopardising the placement.
At least she's upped her scores for the forthcoming review!
It's miserable to see her so unhappy.
Thanks for being there.
One day at a time eh?
xxx
I do my 15 minute workout which gets me my endorphin fix mellowing me out for a while. Most of the time that works. I can feel my craziness growing. Friday will be week since I last did the workout. I can go a week without one now. After a week it has to be done.
Listen to sad music and cry! It's very therapeutic. You can do it while you eat your Rye bread? Unless you want to sing along in which case best avoid the bread!
So sorry that Liz is giving the staff a hard time. I suppose it's the only way she can vent her anger? She must wish it was all over Kevin? A clever woman locked in her own body. Hard to think of anything worse? Everyone suffers like hell but some just give in and die. Others try to fight back. Usually against the one they love. As you are not there 24/7 then she takes it out on those who are? I am sure I am stating the obvious Kevin? All I can say is how sorry I am.
Oh, that emotional rollercoaster...😔. You love your wife, you would do anything to reverse the disease for her - you cant - you know that, she knows that, you understand her anger - but all that doesnt stop the anger - aaauuggghhh!!
I went looking for something on the internet dealing with "locked-in" patients' anger: good luck finding anything...😳. But I did find a blog I thought Liz might appreciate: "I'm an angry disabled girl and sometimes that's ok" its well written and not too long. (Sorry I dont know how to copy t he link on my phone)
As to how do we cope? Removing ourselves when we can..long walks...wine...baking bread...praying for strength for those who believe in prayer...
I wish I could think of something constructive to do with my spouse's anger - the way the young woman above has started a blog - but he can't communicate.
Now where's that wine?? Some rye toast would go great with it ...😉
PS: Remember that time you were out with Liz and she directed you here there and everywhere? Is she better when she gets out? Does she get enough physical stimulation to tire her out? It sounds like she may have energy to burn? Any other way for to get (positive) physical challenge in the nursing home?
I am sure you are a better chef than you give credit for so....Open a bottle And eat wherever And whatever takes your fancy. It hurts like hell when your loved one gives you a hard time but being unable to put into words exactly how they feel must be equally distressing. Thinking of you and Liz. Love Jxx
Oh Kevin I really feel for you. When sad I can’t/won’t drink as I know it just makes me few worse. I’ve started going for drives and dog walking as don’t really have anyone to talk to but I do find ranting on here and knowing that people are upfront honest caring and most of all understand the anger and sadness, I find it really helpful just reading the reassurance that others give.
I’m back at work now after getting the CHC funding and it’s great to feel like me again however I know that I will crash again and when I do, you will all be hearing from me 😳
Luis, I'm sorry to hear this too. I echo Jean - you are always positive and practical, offering solutions and support. You clearly work very hard at it! It must be very discouraging to not get a positive result for your wife.
I'm sorry your are faced with this too. I'm fairly certain that this symptom is PSP driven for Liz. She is relaxed after taking CBD oil, but still angry.
I feel a tiredness which comes from being emotionally wrung out after a Liz bad day. Is that how it is for you? (On top of the daily care demands).
I'm hoping the Citalopram is going to help a bit.
Microsoft keeps me pretty distracted...
Nothing like a PC issue to take my mind off things!
I believe that tiredness becomes more evident when the patient acts unjustly against their caregivers and does not cooperate.
Swim and swim watching the shore farther and farther and more unstable waters end up hurting.
I try to have outside life with friends and other caregivers (today we have a meal at the end of the course) but there is a low intensity but chronic fatigue that I do not know how to balance. Maybe taking CBD Oil too?
I know exactly where you are, it’s fatigue and feeling unjustly treated when they become violent and hurt you physically that really get me down.
I have found out (by accident) that if my B doesn’t take his 4pm Co-careldopa tablet he is less prone to violence, as it normally occurs in the evening.
I’ve consulted the Parkinson’s nurse about it and she said it was ok.
Ditto Kevin, I had a major meltdown just now when Mary failed to make the commode (again) and soaked the carpet, I wished her dead and now feel devastated. All she said was "you don't mean it" which compounded my shame! Rob
Dear Rob - You need a big hug XXX I will bet there isn't one of us caregivers who haven't felt exactly the same at some point!
When I get exasperated and hubby says "I wish I were dead" - he isn't saying it because he hates HIS situation - it's because he feels life is frustrating and bad for ME and I'd be better off if he were dead!! (..or if he doesn't really feel that, he is darned good at using it as a technique to get me to quit being frustrated with him..!..) so I have to be careful about showing frustration. In Canada we have MAID legislation (legal assisted suicide) You better believe I don't ever want to be the one who prompts him asking for that!!
Ugh!! The crap we are forced to deal with because of this foul disease!!
Oh Kevin my heart breaks for you, I wish you get the lovely Liz back soon, I am feeling exactly the same George fell off the toilet today, then he was horrible to me telling me I didn’t care about him or his care, it really hurts, so I feel exactly where you are coming from. I hope the love of your life surfaces very soon, so you can feel loved like you love your Liz. Bread sounds delicious. Xxxxx
We had a few safeguarding interviews because of the bruises too. They came to nought of course. Too many clinicians just could not get the idea of impulsive behaviour and falling. They were further emotional roller coasters on top of roller coasters.
She has good and bad days... Sometimes she goes to extreme efforts and reaches out and takes my hand to kiss it. It takes her so much effort. Makes me tearful.
I hope you both have a better day today. I guess that's all we can ask for.
So sorry to hear what a painful time you are both having. I hate PSP . Some good suggestions from others wish I had pearls of wisdom to offer you but I am. sadly lacking.
When I think I can’t bear it anymore I go feed my sourdough starter, eat, make bread, play with the cat. What I want to do is run away screaming that life is so unfair!! But love just about keeps me here .
In between the storms I try to keep up with daily meditations , yoga, walking, listening to audiobooks. I really notice I am more screaming banshee without these. I hope that Liz can find a little peace and calm In this horrible storm that is PSP!
You are so lucky - my cats idea of play is sitting on top of me at 5.00 am quietly meowing and if that doesn't wake me up she walks up ad down on top of me until I give up pretending to be asleep.
Yoga and meditation sound great... I do mindfulness and active dreaming.
I've got a rye starter on the go at the moment... It packs a punch!
Banshee is such a good description of the states I could get into... It's horrible after isn't it... At times I just couldn't recognise my self.
Pray and eat, and eat and eat.....although I don’t have tough days now; which means I should have lost weight, but I haven’t. How I remember the tough days though and really feel for all here who are suffering, those living with PSP and those like you Kevin, whose lives have changed because of loved ones with PSP. My darling was never angry so my tough days were for other reasons. I had the results of my darling’s brain examination post-mortem which showed he had the very beginnings of Alzheimer’s. My mum lived with that for 15 years and went through a very angry stage peppered with moments of affection. She would lash out, scratch, kick etc and after threatening to stab me, thumped me in the back so hard I thought she had done it. From then on I was her cousin and her daughter was dead. Thankfully this period did eventually pass although it took a long time and she became a gentle old lady, although I was still dead to her.
When I read of folk with PSP being uncharacteristicly angry or violent, I do wonder if they may have Alzheimer’s as well or the same part of the brain is being damaged by PSP. I hope and pray that your dear Lizzy is going through a period of time that will soon change and her anger will subside.
Bev, there just is no end to the cruelty of neurodegenerative diseases is there?? I was so close to my mum...I can't imagine how awful that Alz experience would have been....bloody rampant tau proteins!!
That’s why I’m doing what I’m doing now....what I want to do. 15 years of mum, followed by another 7 years of frail dad who was 90 when mum died and during those 7 years my darling was diagnosed. Dad died at 97 and my darling 3 years later. I survived so am making the most of what’s left.
“What do you do when the going gets tough?” Oftimes, I come here and find encouraging words from Kevin_1! 😉
I have so often thought about this when I react to Bob’s nasty words... telling myself to shut it out, pretend he just didn’t even say that. Occasionally, I can. Most times, I can’t help feeling the sting ... and the anger back at him when I know it should be at PSP.
I agree with all the 🍷🍻🍸 ... and also to keep coming here to let it out!
Kevin, I'm sorry. This disease does not decide "when and how" it will act out.
I do know for myself that it is difficult for me to separate a person's behavior from the illness. I may know it cognitively, but emotionally I see the "person I love" intentionally attacking me. I think that's normal. With PSP we have to take a step back. Separate the person we love from the illness.
You and the staff are the people physically there. Her brain is causing her aggression and where else can she let it out? She is NOT intentionally trying or making a decision to lash out.
Remember, that you placed Liz because you felt a more "emotionally removed staff" would better serve her needs. PSP being what it is. I support you in that decision.
Try and put a new spin on the situation.......the staff is getting first hand experience in shifting moods. They are getting valuable experience. Liz is NOT their sister, daughter, wife, mom, family, but a patient under their care whose symptoms are being expressed.
If Liz were healthy she would be mortified to be told of her behavior.
I know you know all that I have shared. I am just reminding you. Keeping you in my prayers.
Yes, she would be mortified. In fact she regularly is when she stops and thinks. That just makes her more miserable.
Y'know you have given me an idea. I wonder to what degree this is coming from fear as well. I shall talk with her and give her hugs on those lines today.
There's nothing like being out in nature during a day like that.
Praying.
Calling a person and saying, "May I just rant?" and then doing that.
Eating all the foods.
Animals--moggies and otherwise
Poetry
We are all rooting for you, Kevin and Liz. I still think that the birthday might be bringing up lots of emotion. The dates we set aside as happy times, which still need to be celebrated!--can often remind us of what we're missing. This isn't at all what you and Liz hoped for at this birthday. You wanted to enjoy together, and you're doing a 'bang-up' job of creating things for her to enjoy. But the marker of the birthday might be creating grief at realizing what she's lost. Maybe things might settle a bit later?
Hi Kevin. It's such a rollercoaster of emotions isn't it? I've found my release is to play my music really loud in my car and sing like no one's watching.... it's the simple things. Much love to you and Lizzie ❤❤
The weather is lovely at the moment Kevin. If you are able to get Liz out in the wheelchair each day that may help. I have found with my husband, whose behavior can get quite challenging to say the least, that a walk in the wheelchair makes a big difference and I think it makes life seem so much more normal for him. The challenges don't go away but those trips out make him feel more a part of things. We spent some time in the Isabella Plantation in Richmond Park on Monday and actually had him laughing, a rarity these days. Those are precious moments. Best wishes. hilsandR
You will have to do the whole cycling clothes bit - the purple shiny dark glasses, black lycra clothing and brightly coloured water bottles strapped to the wheelchair... R will have to dress the same. Footpath rage is totally acceptable too.
........ and just to add to that rather attractive ensemble, Kevin, I will attach an enormous hooter to the chair handlebars to kick start a bit of footpath rage, especially with the aim of scattering those folks who seem to think I am able to manoeuvre the wheelchair on a sixpence. Thanks for a cheery start to the day - wishing you a peaceful one. HilsandR
My heart goes out to you, man. It is so unfair when you do so much.
I guess the citalopram is for you. I am doing my best to keep Ruth on sufficient anti-depressants to keep her on a reasonably even keel - 25mg of Sertraline and 30mg of mirtazapine a day . Selfishly I know that part of it is to make my life easier. She does not want anything that is going to make her feel even more dizzy, but I am hoping this clever generations of drugs is not to blame.
I hung on for a few years. Each morning I would wake with a feeling of dread, make myself get up and then make myself set too with what needed to be done. Tears in my heart most of the time and then Liz would smile and give me a hug and then it was tears for what the illness was doing to her. She could never see how horrid she was being and when I explained something she had just done she looked genuinely surprised. Most often she thought I was having issues, not her.
I don't have a personalised god to pray to. So I would just sit and breath and try to re-centre. In the end I couldn't find a centre at all! I kept thinking a stronger person would cope better and I am sure they would. However like the Oak and the Willow in a storm my way has always to be to bend and recover not stand until I break. Like water is to a stone, I quietly penetrate the matter and not smash it open. So I accepted my vulnerability and tried to work with it.
I lived for those moments when Liz would smile and tell me she loved me.
Yesterday she did just that. She is in there, frightened and living away from all that she cares for.
I will persevere and stand with her and like many here say... It's the illness not the person.
Sorry this post turned into more than I meant.
I wish you whatever you need to make everything good for you both.
Oh Kevin, I so so feel for you both. I remember when Leon got angry with me. I would just go and cry. His re-action was you are only crying for sympathy. That of course made it worse. I felt so hopeless and helpless. I would have loved nothing better than go for a walk, but wasn't game, as I was afraid he would fall. In the beginning it was horrid, he would acuse me of having affairs with all and sundry, where I got the time I'll never know, as I was with him 24/7. Ugghhhhh. Sending massive hugs and thoughts Marg H
I know the feeling but it doesn't help much when it happens. Just know that it's the disease not Liz. I have to remember this each and every day!!! I relate to Charles like I'm used to doing and keep forgetting that it's not all him anymore. So we go on, Kevin, with your love for her there always.
I thought I would share my angry moment and give you all a laugh. We had only been moved into the house in town for a couple of weeks and I had help Ch out to his nursery where he wanted to build a rail. He wanted to use a particular saw but could not so was directing me - doing the best I could. He was getting mad because I did not know one end of the tools from the other and began to treat me like a stupid slave . All of a sudden I snapped and yelled very bad verbal abuse at the top of my voice. It was like all of the months of patience had turned into a whirlwind and spewed out of my mouth... Then as I walked away I heard the silence from the new neighbours on all sides. .... I have never cone that again, now I take to deep breathing and walk away. ... 5 months later the neighbours still avoid me. I smile and wave and think how lonely it all is but how much more lonely it will be after the awful days (months? years?) I see ahead. ... cheers ...V (I reckon the wine is a good plan)
Wish I had more profound advice for you bro. When the going gets tough I feel sorry for myself and cry like a little girl. On the inside. Rather, I remember I am a warrior, suck it up, and keep on fighting. Don't really know any other way. Try to remember why you are here and what you mean to Liz, myself, and so many others you help every day. This is no small thing mate. Look the devil in the eye and spit...
It's a girlie do... they let me step into the room a little... But believe me it's a little scary... They go back a long way... But I'm determined to get the photos and a hug from my Sweetie...
Tomorrow, I promise, it will be a 'News of the World' expose...
Kevin I like that creating bread works for you . . . There is nothing better than the smell of baking bread UNLESS it is baking cookies. I make wonderful cookies and share them with everyone. The new neighbors really like me but they love my chocolate chip cookies (my son's favorite). My car mechanics love when I make an appointment in hopes of getting some oatmeal raisin cookies. (I try not to disappoint because these are my favorite - I call them my nutritional supplements.) Once they returned the empty cookie jar with a note inside that someone robbed the shop but the only things they stole were the cookies. I love their humor.
Thanks for the chuckle - lovely - you must be rather good at baking.
I only allow myself to bake those sorts of things v e r y occasionally. Which is good, because I'm not such a good cookie baker and my cakes are even worse!
Yes, I'm with you on the smell of baking cookies... My neighbour bakes them quite a bit... The smell is enough to make me whimper!
I have been known to burn more than a few cookies. Once my daughter in law stopped me as I was getting ready to toss some really burnt snickerdoodles in the trash. She said she loved burnt cookies so for 25 years she has helped hide my mistakes. The smell of baked goods in my home is what I enjoy the best . . . it reminds me of better times. When my son crashed his motorcycle I wanted to bake cookies. . . after my introduction to Hospice for my mom I wanted to bake cookies. Gee - sounds like baking is my productive therapy - Thank God I share with family & friends or I would weigh a trillion pounds. Maybe baking bread is a very good stress reliever for you. I also found that using a sledge hammer on the old car my sons used for parts is a great activity on my really bad days. LOL
I had Liz home today and a couple of her girlfriends came over... another 'Girlie do' No men. (They're all on the feminist spectrum as am I so it's great to welcome them a to a girlie do without being decimated )
I mainly stayed in the kitchen doing a German rye bread recipe I'm trying to get "perfekt".
The two friends are pretty good cookie/cake bakers, so I told them your way of baking and sharing. The were delighted and much was said about it as a way of quietly sharing love and care. You might be starting a movement here!
I do hope your son recovered. That must have been a terrible experience for you.
I love the bit about taking a sledgehammer to the old car! Damned therapeutic. And, it probably entertains you neighbours
Do you give them cookies afterwards? Chuckles.
Would you mind if I call my current Rye recipe "Sledge Hammer Brot" It seems to fit fairly well. Tomorrow I will try to work out how to fit the handle. But the taste is great!
I come from a family where cooking good food for others is a core sharing theme. I make myself cook these days... It seems so weird to cook for myself now Liz can nologer eat solids. So I make myself cook and I make myself bake bread... It's so grounding.
I shall forever think of you sledge hammering a car before baking cookies and the sweetly offering them to others... Such a great image. You must have a great heart.
What a wonderful day you created for your wife and friend and of course yourself too. . . Kevin you did good. I love the new name for your bread. Now I am wondering if I can find a sledge hammer cookie cuter. . . I will ask my granddaughter to do a search on line. Thank you for the smile Kevin and Anne G. My son is ok... making the best he can after the trauma to his body. I live in the country so the sledge hammer events were hidden behind the trees.
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Angry trying to calm down
Bad day yesterday....
Getting through the day
