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Perspective on Guilt
I want to thank all of you for the important work you do. Your LOs are lucky to have you and the fact that people like you exist who take on this important sometimes impossible work gives me hope for humanity.
I feel ridiculous for saying anything given my situation compared to some of the heartbreaking stories I've read on the message board. My Dad is in the moderate stages of Alzheimers. Thankfully he doesn't need help with personal care yet and I am still able to leave him alone during the day while I am at work. I also have the benefit of being able to adjust my schedule accordingly so I can be here for a good chunk of the day. My kids have also been hugely supportive in staying with Grampa when I need a break. All in all, I have the best of a difficult situation.
I'm reaching out because I feel like I'm not doing enough; not doing enough with Dad to engage him and give him the best quality of life possible, feel like I'm not taking good enough care of the house, the kids, my clients and feel guilty as all get out. I'm managing but barely and though I've taken care of all I can in regard to POAs, funeral arrangements and getting Dad on waiting lists for long term care facilities, I keep wondering when it's going to get too much for me, when I'll have to bring a professional caregiver in and how long we'll be able to keep him home. I feel like nobody understands and doesn't know what to say the few times I open up.
If any of you have felt this way, I would appreciate you sharing. I tend to be a fiercely independent introvert, but if I'm to survive this and do the best job possible for Dad, I'm going to have to learn to ask for help. I'm grateful this community exists to make that possible.
Thanks in advance for your consideration and my apologies for the long message.
Welcome to the forum. Your post made me smile actually, because I identify with your -dare i say it-perfectionist tendencies? I wondered how you would respond if you were on the receiving end of this message instead of the sending end. I imagine you would respond with compassion and say, "give yourself a break."
there's no perfection in dementia caregiving or in most other spheres of our lives, for that matter. But there is a very important psychological concept of "good enough." You sound like you're doing a great job.
You are not responsible for giving your dad the best quality of life; the disease is robbing him of that, and you can't fix it. You can grieve it, but to feel guilty about that is a waste of energy i think.
don't know if that helps-it is meant kindly. Im sure others will chime in.
Cobbling on to what M1 said, it sounds like you're on a roll! Keep in mind that this will change at some point, but you already know that. In fact, give yourself a pat on the back, because there are many who throw up their hands and disappear, and there are those who take advantage. You are doing great. Your dad sounds like he is doing well. He doesn't need too much hovering.
What exactly does dad do during the day alone? Do you have cameras? Be sure he is safe. If he is engaging himself with activities, even if to you they are boring, it's okay.
You say you are a perfectionist. The most perfect thing you can do, IMO, is to read a lot of threads and learn from the members, because they will tell you what professionals won't tell you. Read and keep posting. Best wishes!
I understand how you feel. I wondered for a long time what was going to happen with our LO. She refused to believe that she had anything wrong and we were relegated to the role of emergency managers for years - and there were nonstop emergencies. My husband moved to the other side of the country for months on end trying to help her. So many milestones came and gone through this journey. When my LO started to refuse showers, brushing her teeth, then she started shadowing and wandering. Then the strokes and incontinence. I didn't know the deep cruelty of the disease until I saw all of the joy drained from my LO only to be filled with misery. Now we are in Stage 7 and she fights on, she has been on hospice with a 24 hour nurse in a SNF for over a year, she is unable to do anything - some days she can't hold her head up it's devastating to see this happen to someone you love. She can no longer move any part of her body, and can only communicate hello occasionally. The disease has filled me with so much worry over the years. Most of the worries came to fruition and so many other tragic things I had never considered or had knowledge of also happened. I think it's ok to be filled with concern, this is a very long disease that is devastating in every way. It's also the most expensive disease there is. I am a worrier by nature, so yes I worry about the financials and I feel guilty for doing so, but the money has to come from somewhere and we are the managers of her quickly dissolving estate so I worry, she could run out of money. I am sorry that you are going through this. I am sorry that I don't have any consoling words except that I have been where you are and I am sorry that you are going through this. We also worried that we weren't doing enough for her. The truth is we all are truly doing the best that we can. It's never going to be perfect. I understand when you mention that no one you tell understands - they don't. Unless someone has dealt with this disease they have no idea what it is like. They don't know what it is like to be dealing with an adult that has literally lost their mind but has the capacity to steal the car and wreck it then deny it, wander the streets aimlessly, try and throw themselves from their wheelchair, refuse a shower for months on end, swear to you they see things that aren't there, give huge amounts of money to neighbors that is needed for their care, fire caregivers....it's been a long road.
Keep a sense of humor, the WEIRDEST stuff happens , no late night comedy writers staff could make up some of the stuff we encounter [ "potty jokes?" why yes!] .
You're on a journey, and from your planning you've got your maps, your snacks, and like every trip in "real life" you never know where you'll end up.
Keeping your Dad safe is the goal, if happy/content happens - great. But their brains change, empathy tends to go, etc so HAPPY is not a goal of any realistic caregiver.
P.S. I'd watch your kids (you don't say how old they are) - they tend to say "yeah Dad/Mom it's fine" when you ask how it's going with your Dad - but if they bring friends home less, their grades drop -- consider if having him in the household may not be creating issues you don't want. And they don't want to rock your momentum by complaining to you - so it eats them up .
They deserve their child/young adulthood without the sadness of dementia, and you deserve your precious time with them .
Welcome to the forum. One of the ways we help one another here is by posing questions and suggesting possibilities - food for thought. Here's mine:
Have you considered the possibility that your father might benefit from placement in an Assisted Living facility instead of your home? There are so many advantages to him having an apartment he can call his own, with other people his age, eating meals together, engaging in group activities, and making new friends. It's a way of restoring his feeling of independence, but with the safety net of a staff of people who can make sure he takes his meds, has housekeeping and laundry assistance, prepares his meals, and can instantly respond in an emergency. Assisted Living can pay huge dividends for everyone concerned. I wonder if you're just a tad bit early in assuming the full-time caregiver role with him in your home. It may not be the kindness you think it is. If you're concerned about leaving him alone, not being able to keep him engaged in daily life, or feeling stressed that you're not doing enough, Assisted Living could be an answer.
I didn't get a chance to get my wife in MC or anywhere else. But I see you have a few places picked out. Do yourself and your family a big favor, if there is a opening take it. It will pay off immensely , you will still be taking care of him and your family too.
This disease keeps taking the caregiver down just like it will do to the loved one, your Dad. Listen to the others on here, they have been in your shoes. You can learn from them. Hoot
To me it sounds like you’re doing all that you can and well. You’ve got him on a waiting list for facilities, you’ve got paperwork in order, you’re caring for him... Give yourself a break. He’s fortunate to have you in his corner! As far as quality of life… yours and your children’s lives n”deserve quality too. When we’re doing so many things we can’t do all of them well (perfectly). I feel that too.
The anxiety that comes with juggling so many things can be mentally paralyzing for me. I just try to take a breath and realize I’m doing the best I can and doesn’t mean I need to do it all, all the time. My mom is safe and seems comfortable. That’s my success for today.
What we’re dealing with is relative and can’t be compared to others, not really. All of our histories (baggage) are different as well as our LO’s history. What you’re feeling and dealing with is worthy of support. Please continue sharing.
Hello all. I'm new to the board because of wanting to connect with other caregivers. My 87 year old father has moderate stage dementia and is in a long-term care facility. I believe the disease was slow and gradual over a long period of time until "unusual" events started surfacing back in May (emergency room visits, losing his cell phone, getting lost, etc). But he's safe now. He has his complaints but I listen. And he eventually realizes this is how things are for his long term care.
I understand about guilt. I experience it every day about my dad's care. I trust the facility he's in but he "resents" having the life he used to know taken away from him. It's like a punishment for him, I guess. I told him they're doing the best they can and I just want him to be happy. I do visit often because the facility is close to my residence. Right now, he's on a secure floor because he's at risk for wandering. So more guilt.
If you know in your heart of hearts you've done everything possible to make your LO's life a little easier with a horrible, horrible disease, don't beat yourself up. The fact that you do care and pay attention to their needs is probably more than most can handle. I'm new to all of this with dad. I'm his POA and manage his apartment, finances (which were in ruins until I straightened things out), medical decisions, etc. I tell people it's like a 2nd job!
Prayers for strength, patience, and understanding as we're all coping...
Hi & welcome to the forum! Please DO NOT feel ridiculous about anything when it comes to dealing with this disease. I have felt what you described many times. I am glad that you found us, you will get plenty of support. You said that nobody understands and don't know how to respond when you do open up. I have found that people who have never had to be involved with a PWD (person with dementia) has no clue at all about anything that we have to do, what we have to learn, how we have to reorganize our life, even our way of thinking and how we have to learn how to respond to our PWD. They just don't know. You can open up here, ask any questions here, vent or rage here. You will find people who understand and care. Try not to be so hard on yourself. I know that's easy to say but it's true. For a long time I was my own worst enemy. As I start a new journey with my dad, its happening to me again. I find myself sort of relearning the facts and feelings and being angry again when I already know that anger is useless to me.
I wish you the best. I think you are doing a great job of being a caregiver.
Hello dwadd333 Dana,
Welcome to the forum! I think your dad is fortunate to have you for his daughter! My dad is 85 and we are at the beginning of his dementia journey. To be honest, I am not looking forward to this stage of my life. I am scared to death. His personality is so much stronger than my mom.
I am glad you found us! We have many wise and caring people here. I would have never made it without the support they have given me.
I'm also new here, and I moved my mom to a memory care within the past month. I feel so guilty about not being able to have her at home even though I know that I am not equipped to deal with the challenges of the situation.
One of my college roommates went through Alzheimers with her dad. She gave me some very wise words to reflect on: sometimes we need to allow others to provide the care so that we can simply love them. I think about this daily, and it gives me perspective. It would not have been good or practical for me to try to have her at home due to my situation - I recognize this reality even though I don't always like it. We each need to consider what is best for our unique situation.
I'm at a place where my dad's long term care facility has earned our trust. I work fulltime and have no children or grandchildren to help with what he truly needs. Relatives are scattered all over the place so I wouldn't expect them to do anymore than they already have.
His residence isn't far from mine so visits are frequent but I'm not as obsessed as I were before. Not because I don't want to see him but because he's receiving the best care possible which makes life less complicated for us. He's even started using Google Meet on his Android -- it's an app similar to Facetime or Zoom.
Dealing with his dementia is still an uphill challenge but we're both grateful and thankful to everyone in the community responsible for his care.