Intrusive thought
I am fairly new here. I've posted here and there in response to other people, but saw a post in the "caring for spouse/partner" section that resonated with me.
I was born with a life-threatening disorder, which I have miraculously been able to defy the grim reaper's grasp. I have become a disabled R.N and have watched the dwindling away of my immediate family members.
Despite having begged our pcp for years to test my pwd's cognition, he FINALLY did so in December, giving a diagnosis of Dementia with MILD cognitive decline. There is absolutely nothing mild about it. She is easily heading into stage 5.
As I have seen her deteriorate over the years, finally getting a diagnosis, absolutely terrifies me. I feel that, now more than ever, she is going to need me for the long haul. Statistically, they can live 5-10 years after diagnosis.
As I am in the end stage of my own pathology, I find myself hoping that she will barrel through her stages quickly and be able to be laid to rest, so that I can then prepare for my own demise with one less person to worry about. I feel awful writing this, but it is my very painful reality.💔
Comments
-
You should not feel bad at all. I’m in my 60’s. While I’m in fairly good health, I know this is probably the best I’m going to feel as things only begin to ache more and more with age. While friends plan elaborate vacations, I’m taking mom to doctors appointments, and trying to dig through her house to clean it out, managing her finances and visiting only to have her mad and not speaking to me. I can’t even imagine what real retirement looks like. She could end up living longer than me. If I can feel Whiny and resentful you most definitely have every right to feel the same. I’m sure you will find many others here who can relate to the feelings you are having.
2 -
it’s okay to feel this way. I retired at age 62 in Dec 2020 partially due to the demands of caregiving for my mom and step/dad- and they were in assisted living at the time. I just could not predict I could work the entire week or if they were going to need me. He died Feb 2024. She died in Nov 2024. So my early to mid sixties were spent taking care of them. I had two compressed vertabrae fractures and a knee replacement while doing so. I didn’t feel like I was ever going to get time for me.
Second knee replacement was 4 weeks ago.4 -
So sorry about the diagnosis. My DH was diagnosed in 2021. I had planned on caring for him as long as I was physically able. In December 2023 I was diagnosed with aggressive breast cancer. His only daughter lives out of state and is disabled. I had no choice but to immediately place my DH in memory care. I then prayed I would live long enough to make sure he was well cared for. He passed away in August 2024. My prayers were answered. So I know exactly how you feel. I miss him so much it hurts but am thankful he’s no longer suffering. His 80th birthday would have been yesterday. 😢 People on this forum advised me to have a Plan B and I was either in denial or thought I had time. Maybe a little of both. Come here often for support. Hugs. 💜🩷
4 -
@JulietteBee
You are not alone in your thoughts.
One point, it's pretty common for doctors— especially long-time PCPs— to couch the diagnosis when first given. Often the doctor will diagnosis "mild" or even MCI on a first visit.
The other piece that complicates this is that medical people describe 3 stages (mild, moderate, severe) of dementia in terms of what treatment (infusions, oral medications) is indicated, whereas family use the 7-stage model based on caregiving needs.
This can be a ghastly disease and it's not uncommon for family to pray for an exit ramp for a lot of reasons. It might be the pain of witnessing the death-by-inches of a much-loved individual with all the losses and indignities that accompany that. It could be a wish for a release of anxiety and confusion for their LO. Sometimes money is in play when assets are dwindling, and Medicaid options aren't great in your community. It can be related to watching a parent in the role of caregiver being eaten alive by thedemands of the long goodbye
1 -
Sorry, continuing tech issue.
It can be related to watching a parent suffer the demands of the long goodbye essentially robbing you of both parents. And there can be complex emotions when the caregiving diverts your time and attention from other LOs.
It's hard stuff.
HB2 -
@Quilting brings calm
How'd the second knee go? Any easier this time?0 -
Recovery was actually a little slower the first three weeks. The pain was worse so I don’t think I moved around enough. That a circular thing - more pain means less movement, less movement means more pain. It will be 4 weeks Tuesday and I’ve progressed to mostly walking without a cane in the house. Haven’t tried that outside of the house. It’s the right knee so I am not driving yet
On a good note, though, I haven’t had any pain meds except Tylenol for over a week. My lower back and right hip haven’t hurt since surgery. So that’s an unexpected but welcome benefit!1 -
I'm sorry to hear that. When mom had her first knee done, her doctor prescribed a continuous passive motion machine which she loved and reported much less pain with. The surgeon who did her second and my first knee says these are falling out of favor because they can cause complications. Both she and my BIL claim the TKR on their dominant leg was more troublesome.
I hope things improve for you.0 -
Thank you for the kind assurance that I am not alone in feeling the way I do, and for also validating my feelings.
I read somewhere here about our switching roles from mother-daughter to patient-caregiver. I doubt if we had remained plain old "mommy and me" that I would have developed this thought, but having switched to patient-caregiver, I am feeling quite overwhelmed.
1 -
Thank you for sharing! I am sure it sounds selfish to others able to live life without being a fulltime caretaker while dealing with personal issues, but that is exactly it. I feel I have no time to tend to my health as her Healthcare needs have become all encompassing.
I am no longer only a doting daughter with the option if visiting/calling when I find it convenient. I am her Healthcare Surrogate. I am her POA. I am her chauffeur. I am her only child. Last but not least, I am her confidant, sworn to secrecy and of letting no one know in on the knowledge of her decline.💔
1 -
Yes, you definetely had your prayers answered. That is the prayer of my heart. It is certainly not that I want my dm to die. It is just that being her only surviving offspring, I feel that it is my duty to be here for her during her time of need. However, knowing that my own expiration date have come & gone many times, I recognize that I am living on borrowed time. I just do not want my final time to come before hers. She would be so lost. 💔
How has your cancer responded to treatment? I hope it is in remission.
1 -
@harshedbuzz, you are so correct about an exit ramp. I failed to see that there could be many reasons leading me to look for that ramp. In my case, I believe it's the possibility of the long goodbye lasting a decade that is terrifying me.
I feel like mom & I are racing against the clock. She may have 10 years. I do not. My mind is kept in a hyper-vigilant state, while my body is running from one emergency situation to another,. This is so not good for my health.
I just spent 3 days at her hospital bedside due to her pre-existing and I know I can not keep up this pace for very long without permanently tanking my own health.
1 -
JulietteBee, I am so sorry for your suffering coupled with the caregiving stress for your mom. I am 59 and reasonably healthy, so I believed until this spring. I now have a cancer diagnosis. While my prognosis is hopeful, it certainly is a wakeup call that mom could possibly outlive me. Very scary. My mom is farther along in her dementia than yours, so I can appreciate that your situation is more dire. Prayers and hope for you. You are not wrong to wish for that exit ramp. You love your mom and want to be there for her as long as she needs you.
2 -
Thank you for your kind understanding & empathy That is exactly the cause for my concern & desire for that exit ramp sooner than later. I do not want to pre-deacese her but fear that it is now a very likely scenario.
I am so sorry to hear of your mom's advance stage, now added to your new diagnosis of cancer. If you had one piece of advice you could share regarding coping, what would it be?
0 -
Faith in God is an important part of my life and helps me in everything. Next on my list for helping me cope with my mom's dementia would be this forum. The nonjudgmental support of others who have "been there, done that" is so helpful both practically and emotionally. I'm an RN too (oncology) and find that my experience is both useful for knowledge of the healthcare system AND extra stressful as we nurses sometimes feel responsible to be perfectly vigilant and insightful about our LO 's care even whilst dealing with our own health and stress ...
0 -
Thank you for sharing.
Faith is the absolute only thing that keeps me from curling up in a ball, refuse to eat/drink, and just bawl.
I will now lean into the amazing comforters and supporters I have found on this platform. It's amazing, taking care of patients with Alzheimers in a professional setting, bedside nurses do not typically have the time to seek out resources that can help our patients & their families.
When a diagnosis affects us, we then stumble upon sites & programs that are available. I am regretful of my dereliction of duty to my patients, but eternally grateful to have found you guys in this, my time if need.
2 -
I get scans every 6 months. My last scan in February was clear. 🙏 Next scan August. There is no real remission with the type of cancer I have. There is a 50% chance it will return within 5 years. It’s a rare aggressive cancer caused by radiation I had in 2017. I’m just thankful for every day.
3 -
Thank you for sharing. If you do not mind, I will add you to my personal prayer list, praying especially that you will be in the 50% that never experience its return. 🫂
1 -
Thank you so much. I really appreciate it.
1
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
- 529 Living With Alzheimer's or Dementia
- 270 I Am Living With Alzheimer's or Other Dementia
- 259 I Am Living With Younger Onset Alzheimer's
- 15.7K Supporting Someone Living with Dementia
- 5.4K I Am a Caregiver (General Topics)
- 7.6K Caring For a Spouse or Partner
- 2.3K Caring for a Parent
- 199 Caring Long Distance
- 121 Supporting Those Who Have Lost Someone
- 15 Discusiones en Español
- 5 Vivir con Alzheimer u Otra Demencia
- 4 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 10 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 7 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