Angry
Just. So. Angry.
Comments
-
OH, believe me, I understand!
1 -
Ditto-and sad
3 -
I had my WHY moment last night. I wouldn't wish this upon anyone but why my kind hearted bf and not a different sibling??? I did ask the Lord for forgiveness. As I was freaking out my bf just hugged me and told me to calm down and that he is gonna make it and to not worry. He is 44 and we met 4.5 years ago and was diagnosed last fall after almost a year if tests. I feel like we are just starting our lives together and a huge a** curveball gets thrown at us. It's poop!!!! A big fat duce!!!!
We are all in this together 💜
6 -
Sorry you're so frustrated Kathy. Care to elaborate? Me: I'm just so tired. Not angry at the moment, just exhausted. My eyes are always bigger than my stomach about what I can get done. Turning into a couch potato, way too much time on the computer (Minesweeper) and the phone (sudoku). I call them topical anesthetics. The garden begs to be weeded, but I just don't have the energy. Feel like i ought to pull the fence out, spray it with Roundup, let the bermuda grass come back and call it a day.
7 -
And you are here M1. I look forward to reading what you write daily, whether it be helping with advice, or posting about your own situation. You are often my port in the storm. I’m not where you are yet, but the fatigue I can understand. Take care.
6 -
I'd like to second trottingalong's comments. Your posts have helped me more than you can know. Take comfort in how much you mean to others in this situation. I wish you the best.
3 -
I completely understand. My anger stems from my LO’s docs not diagnosing sooner. I’ve been “in charge” of moms health for 20 years and not once has any doc said that a stroke especially as massive as hers was when she was 36 years old could lead to VD. Nor did a single one say a thing especially when she scored poorly on a MOCA test or they had to talk to me because any kind of conversation with her was difficult. And to think she has Alz and VD. Shuffling feet, incontinence, repeating stories from the past as if they are present day, delirium and hallucinations when hospitalized. So many signs that were witnessed by medical professionals and I just chalked up to a stroke and being on the spectrum. Thinking that mom has always had an odd sleep schedule and discovering it was sundowning beginning.
I happened to have and bring the chart notes from 1977 for mom’s stroke that also list arterial fibromuscular dysplasia as the cause to her neurology appointment this month. I asked what it was. Neurologist said it is a condition she was born with and that she was basically destined to have dementia from birth. Brain and renal arterial fibromuscular dysplasia is a death sentence or at best dementia.
For 20 years I have provided these chart notes to doctors. It was this last April at moms six month and Medicare check up that I asked about particular issues that had come up. In December she could operate her cell phone and microwave. By April she was completely dependent on me for ADL’s and the sundowning and hallucinations and not remembering that she has lived with me for several years had increased a thousand fold. But there were signs before. Signs I did not see but some medical professional at some point should have.
I have a mental health appointment next week via doctor on demand. I’m hoping to vent some of my frustration. And I am tired. So tired. I work full time on top of this. I was hoping to retire in the next year or two but I’m no longer in that position. The up side is that I have a job with a lot of flexibility. I’ve also always been the “yes” person on staff and I finally feel I can say no when I need to do so. A friend told me that I have spoiled people by always being the one to get things done or take on extra. Well let the unspoiling begin!
3 -
Mrs. B, does it help to know that there's probably not much the docs could have done to prevent your mother's problems, even if diagnosed sooner? Fibromuscular dysplasia is a relatively rare condition and there is no treatment—and certainly there wasn't in 1977. It certainly would have been one of the things they looked for in looking for the cause of a stroke in a woman in her '30's. Entirely possible that everything that's unfolded since then relates back to that one catastrophic event, and age has taken its toll.
Certainly it's frustrating to have to deal with such a devastating disease—and all of us can feel angry that life is just so unfair sometimes, in general. All of us can also feel angry that our medical system is so broken and so hard to navigate. But from what you're saying, I doubt if there's much any of the docs could have done to give her a different outcome. I don't know if that makes you feel better, or worse—hope it's the former. Glad you're getting support for your own mental health.
AnderK, I'd still love to hear more about what's going on with you.
2 -
Angry….Sad…..frustrated, Angry….Sad….frustrated. It's all I feel anymore, and it just repeats itself
2 -
I have been saying for a long time that many doctors are CLUELESS in regards to dementia. That may sound disrespectful, but it is factual. They just don't know. I complained about my own clueless doctors for years. But I had to let it go. The anger and disappointment was eating me up. I can't change the past. What I can do is learn from the past and go forward. And try to help others who are caught in the quagmire. My suggestion is to read a lot of threads and to post a lot. This is what got me out of my deep depression.
Iris
3 -
yep. Angry, sad, frustrated. No end in sight. It’s also not as if my mom is the only person I’m shoring up. There’s no time for me- and @M1- I find myself playing phone Sudoku when I should be doing chores
2 -
Hello, I wrote a very long comment last night, and I am going to copy it in here. M1, I am so sorry for your weariness and for all the others who posted here. All were well said, and stand for me, as well. Even though I saw my husband die of kidney cancer over 25 years ago, it was such a different journey, because I had him as a partner until the morphine for pain muddled him toward the end. So I am reposting what I wrote last night with a few changes.
So here is some of my anger: I am angry about the burden that has beset me. Yes, indeed, part of that burden is the weariness. But part of the burden is the stuff I shouldn't "have" to do. I sold his car. I am working on getting the boat, which is 60 miles from me, ready to go in the water because we "have to" by contract. I am angry that the boating life isn't with us, even though, as many of you might know, it hasn't been for the last year, and it was an issue, as well as well as a concern when he started falling and failing, last year. I am trying to get it in shape to sell, which means that sometime in the next week, I need to go clean out our personal stuff, which probably means that I need to leave at before sunrise, much before he wakes, and be back before 10. And it means throwing money at it.
I am angry at washing piss filled clothes because he sees no need to change his depends.
I am angry that, when my best friend lost her sister, as well as her favored aunt, that I could only go to one funeral, couldn't stick around for the gathering after, because I only had a caretaker, his sister, for a certain amount of time. I am angry that I cannot go visit friends for a weekend, or even for a day because he is not independent.
I am angry that I spent almost 3 hours this morning with an elder care attorney, am changing my will, and looking at the best ways to safeguard his assets…and I had to fabricate a reason for going, in a relationship where previously, if he doesn't know, it is because I forgot to tell him, not that I am keeping things from him because he is no longer a partner..
I am angry that I am not strong enough to put him into memory care, because of his sparks of light. And the thought that if only, if only, I was stronger, I could be a better caretaker.
And I am angry that this disease has taken away his empathy. I am angry that the man that I fell in love with 24 years ago is but a shell of a man, who deserves my love and kindness, but who has no understanding of the toll it is taking on me.
And yes, like many of you, I am like you so, so so very tired.
With respect and kindness to all. Kathy
13 -
so much empathy K. I wish there were answers. Don’t be angry with yourself though, or feel like any of this is your fault or your failure. You’re doing the best you can I’m sure. All of us are too hard on ourselves.
Sometimes it helps me to think about what my partner would say if she were still in her right mind. Does that help you think through any of it?
Sounds like you are considering MC but afraid of it, is that right?
4 -
Kathy:
I am sorry you are going thru this. What we are doing is extraordinary and we are all doing the best we can. We all need to be kinder to ourselves.
2 -
Same Same Same
It's not enough that all the ADLs of a formerly competent partners suddenly falls on us.
It's not enough that we simulantaneously take on all the care and lose the relationship with all the support, friendship, and love that it entailed.
And it's not enough our health care system doesn't take care of our LOs. That our LOs need to be on death's door to get the level of care needed through Hospice and not a minute sooner.
Rantover/
4 -
M1, I will try that tack…It can't hurt. Yes, I am considering, actually, more than considering, memory care. The place I have chosen for him has promised that they will keep me on their list. There are openings now, but I feel like I would be giving up too soon, and taking away too much from him. He so dearly loves our river that runs outside of our home. The MC has also promised to let me know if they get down to one space.
As you addressed about being tired. I wonder if just the tiredness isn't coloring my view of what is happening. We had someone in for three hours for awhile, but then she needed to change hours, just as he was getting somewhat used to her. We are going to start again next week, anyway.
2 -
beautifully said and at the same time, bitterly sad.
2 -
Gosh. I’ve been catching up. This is all so painful, true, heartfelt and really shows how we all really get each other. There is such a range of emotions that we have all shared at various times and will continue to share. I am so appreciative that you are all here as I feel this is the only place I can go where people get it. Friends and family don’t get it. Sometimes it bothers me they don’t try harder. Im sad that DH is gone. He used to be so fearless, giving, helpful, and kept ME sane. Now he is attached to my hip because he is afraid to be without me. His sweetness still shines through when he is isn’t agitated and crazy delusional. I’d could go on. I’m angry that our retirement plans went down the tubes as soon as I retired. I’m hurting for his pain when he calls himself stupid, wants to die, cries and mourns that he no longer know how to think. I’m exhausted being at his beck and call and having to do everything,living 2 lives, having to be on my toes creating answers to question when I have no idea what he’s talking about. I’m depressed about what our lives have become. I have a hard time focusing and getting anything done. I feel like I need to cry but can’t. I have my guilty pleasures to help me turn off my thoughts. I grieve as we both gradually lose ourselves. I squeak by one day at a time, try to find joy in each day, and take time to count my blessings. It’s all I know how to do to get by.
10 -
LaneyG, you said so much that was only shadowed in my missive. Squeaking by, one day at a time. So apt. Kathy
1 -
Clueless is right and even when they are certified in geriatrics, which is the case of my DH and my doctor. In addition to my husband's dementia, we have a 37 yo disabled son who lives with us. Needless to say, I am often stressed and overwhelmed. When I asked our PCP for something to just help take the edge off when I am the most stressed, he gave me twleve (that's 12) Valium. Really?? It should be mandatory reading for physicians dealing with dementia patients to read some of these threads and see what day to day life is like when a loved one has this awful disease. They might develop some insight!!
3 -
so true!!
0 -
I will chime in that physician & neurologist we've seen don't have a clear picture of the disease or what it takes to be a caregiver. I have found that several PA's have had a more compassionate heart. When your with your LO at an appointment the the physician asks the ridiculous question "how's it going?" its just talk. Besides, personally, I refuse to talk badly about my LO with him in the room. Nope, it just won't happen, but that's me. So, I smile & say okay. We all know its not ok, but then it's the acceptable game of physician patient.
I will say, our PCP has me come in for a "check-up" every 4 months. He checks on me and how I'm doing and then asks about my LO, etc. He started doing that when we were in for an appointment with DH and the PCP ask me if I was feel ok. I said fine - and I meant it. He said you look tired, too tired - I want to see you alone sometime and we'll go from there. So hats off to him.
I don't know any caregiver who isn't tired, is there one? I think the key is, as caregivers, we have to find something that cheers us, fills our cup so to speak. Something as simple as gardening, sitting on the patio, walk around the block, read a book - or just sit. Its not deep rest but for me I'm recharged and that's a good thing.
eagle
2 -
I responded once but wanted to add this: it is so hard to fight the anger - but I work on it. And the sadness, exhaustion and all that goes with this illness. And then:
The other day I was doing good and my SIL asked how papa was doing. I just said so-so. He said “he looks good.” I didn’t respond but I wanted to say “what is a man with a shrinking brain supposed to look like”?
Then the anger raised up again.
5 -
Oh, that comment used to make me so upset and angry. But I finally figured out what to say in response to not embarrass myself or the person that made the comment. I usually just say something along the lines of: "Yes he does, on the outside. Your welcome to come spend several days with us to understand this disease. His brain is effected, really, when do you want to come and stay?" What usually happens is they say something like - oh I didn't know - etc.
When someone doesn't know what to say that is the go to - he looks good. Yes he does because I work hard!
eagle
3 -
Regarding "PWD looks good". This is a testament to the caregiver's efforts to scaffold. It can be taken as a compliment. Frankly, IMO, caregivers need to spend less time thinking about what other people think. They don't know what's going on, so why does it matter what they think?
Iris
3 -
I so appreciate this thread. I feel the same. This is so hard. I'm exhausted, angry, stressed, depressed, resentful, devastated, heartbroken… the list goes on and on. It's very hard to see or even look for a light at the end of this tunnel of hell. Being 52 and losing my husband to FTD, watching my boys lose their father, it all feels like too much. I mourn my old life, but look back and wonder, "Was any of it real?" This disease just hurts. Thank you all for sharing here. I hate that it is "dementia" that bonds us, but am grateful to not feel so alone. That's another one… the loneliness 😭
5 -
It is beyond hard - my kids are young parents and watching them lose their dad and the grandkids lose their beloved Grandad is heartbreaking, but I know there are some of you with younger kids and that is even more painful. My brothers and their spouses were texting about Memorial Day plans and one threw in a "How's (DH)"? I somehow couldn't reduce my heartbreak, exhaustion, loneliness and feelings of loss into a text message - so I just let it go unanswered. No one gets it - and I am so grateful for this forum where everyone understands. Just knowing I am not the only one is so comforting, in the midst of all the sadness…
2 -
So many times, I’ve just said “we’re ok” when asked how everyone is doing. A few times when my sisters ask, I’ll unload the truth. There’s always a big silence or a rah-rah “you got this!”
No one really wants to hear. And I can’t blame them. It’s not funny or pleasant and everyone who hears is secretly relieved it’s not their life.
4 -
I was one of those who made comments about the PWD looking good, or acting ok before I had any idea what this disease involved other than “ forgetting things”. I didn’t make the remarks to be unkind or uncaring, quite the opposite. I just had no idea and the caregivers never explained what was really going on or seemed anxious to do so. Now that my DH is affected I do sometimes share what life is really like, mostly in the hope of trying to get attitudes in the medical community toward this horrible disease to change.
2
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 457 Living With Alzheimer's or Dementia
- 229 I Am Living With Alzheimer's or Other Dementia
- 228 I Am Living With Younger Onset Alzheimer's
- 13.7K Supporting Someone Living with Dementia
- 5.1K I Am a Caregiver (General Topics)
- 6.6K Caring For a Spouse or Partner
- 1.7K Caring for a Parent
- 143 Caring Long Distance
- 102 Supporting Those Who Have Lost Someone
- 10 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 8 Prestación de Cuidado
- 1 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help