I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
Sorry for your loss of your Dad.
I completely understand the invisible part. That feeling goes along with not feeling heard. People are rarely listening, and then, only hear about 75% of any conversation with good hearing. I don't know if reading is different, but wanted you to know I heard you! If you stick around, your presence will be acknowledged, people will identify with you and where you are at right now.
Maybe others will click "follow" on your wall, and when you speak up, you will at least be read by others, and others on the forum have lost a loved one. Yes, it is hard to read when others are still going through what you have. There are threads, if you have seen them: "Loss of a loved one",
"Love notes from caregivers who have lost someone", Life after the loss of a loved one"- or similarly worded that will come up in the search bar.
I am so glad you did not actually disappear, and feelings can change over time. So keep reaching out if you can. I love it when others write just what I was about to, so then it saves me time. You have put into words feelings that I have carried for just a long, long time.
Hoping someday that you get the validation you are seeking, hoping it just comes to you that you are loved.
Give yourself some time.
Second, is the distrust of the patient. She regularly tells others how I can't be trusted with giving her the correct dose of Coumadin even though her doctors repeatedly try to assure her that I have a better idea of what she needs than they do!
I hear others saying "I wish I could stay home all day" or "its ok he's watching grandma he's not doing anything"
I really feel that they put people on a healthcare assembly line now. It keeps churning out the money for the insurance and healthcare companies, which have gotten huge. I remember a time when we went to the doctor when we were sick. Now we can't even get an appointment when we're sick, because schedules are tied up with follow-up visits that are scheduled every 4-6 months. But WHY?? If we do get sick, we have to go to urgent care.
The healthcare system is really silly now. My doctor wanted to do a bone scan on me. I declined and said there was no reason to, since I wouldn't take the drugs and I eat well. She made me feel like I was non-compliant by refusing the test.
I get tired of them looking for all these diseases, making sure you're clear. My great problem, I guess, is I don't have an overwhelming desire to live until I'm 100. I know what being old and being maintained by pills is like. I want to check out of this life before my mind leaves.
Nobody warns you about the smell.
The point of having a proper diagnosis is several fold.
Here are points from the https://www.alzheimers.org.uk/info/20071/diagnosis/104/why_do_i_need_a_diagnosis
Why do I need a diagnosis?
A thorough and timely assessment for possible dementia is essential in order to:
- rule out other conditions that may have similar symptoms and may be treatable, including depression, chest and urinary tract infections, severe constipation, and vitamin and thyroid deficiencies
- rule out other possible causes of confusion (eg poor sight or hearing), emotional changes and upsets (eg moving house or bereavement), or the side effects of certain drugs or combinations of drugs
- provide a person with dementia with an explanation for their symptoms, removing uncertainty and allowing them to begin to adjust
- allow a person with dementia to access treatment as well as information, advice and support (emotional, practical, legal and financial)
- allow a person with dementia to plan and make arrangements for the future.
If the outcome of the assessment is a diagnosis of dementia, it is important that the type (eg Alzheimer's disease or vascular dementia) is also diagnosed. Knowing the dementia type will help to understand symptoms, predict how the dementia might progress, and suggest how best to manage it. For example, certain drugs will be prescribed for Alzheimer's disease (but not vascular dementia), although these do not cure the condition.
Also, she passes the in the office memory tests and showtimes so her doctor thinks I am exaggerating. But why bother taking her to a specialist just to get a diagnosis of something I already know.
"The comfort kit"
Haldol especially!!
Where do I begin - hard to say what is the worst, the isolation, feeling like I will never have a life (as my daughter went away to school, next I have to take care of mom), the guilt over wishing I did not have to do this, that I could have a life, knowing that I am not good at this at all, getting impatient when she gets confused and repeats and repeats and repeats, feeling guilty because I hate cooking and housework and especially potty duty, resentful because basically my life is over (sorry for venting, but I'm already going through the anticipatory grief and realistically, after years of caregiving, there will not be much left), resentment over how my physical and mental health is so much worse (and I don't have insurance so can't afford to run up medical bills).
Often I don't know when I'm being self-indulgent in hiring more help or if I really need to do that to preserve what is left of my health. There are times that I don't do the chores both because I am exhausted and because I want to escape. And I feel guilty for that, and guilty because I really do not enjoy caregiving, but some day I will really miss her.
No one ever told me about this. Caregivers suffer in silence.