Feeling too responsible for my 101-year old dad with dementia

YKL · February 4

Hi! I am new here and this is my first post.

My 101.5 year old father lives in his own home and has 4-5 different caregivers who provide 24-hour care. I would say he has moderately high dementia in that he is sometimes very confused, sleeps a lot, can't remember what day it is, etc. He walks with a walker, can converse well, feed himself, etc. I live about an hour away. I have a brother who lives far away; he calls him nightly and visits 2-3 times a year. I call daily and set aside Sunday late afternoons/evenings to visit my father. We usually go out for dinner. I manage his caregivers, finances, home repairs, etc. and deal with any decisions or issues that come up. My husband helps a lot too.

My dad and I have always been close. Up until losing his partner to Alzheimers a few years ago, he was always independent. He traveled around the world with her and they saw each other regularly. With her gone and having outlived all of his friends, I'm pretty much "it." I have reached out to other people to arrange visits. For example, once a week he gets a visitor who brings his dog for my dad to pet. My dad loves the visits with the dog. I have called other organizations to arrange visitors as well. I feel that I am a really good daughter and have done everything to make sure that he is safe and well cared for.

However, I often feel guilty, resentful, worried, stressed, trapped, etc. Every time I see him or talk to him on the phone, he says, "When am I going to see you again?" If I don't call him for a day, he'll think it's been a long time since we talked, and his caregivers will tell me that he wants me to call more often. Sometimes I call twice a day. I know he feels lonely.

I feel enmeshed. I know I need to lead my own life, take vacations when I want, and set clear boundaries so that I can take care of my own needs/desires to lead an independent life. My husband and I are retired and fortunately have the ability to travel for as long as we want, but I feel guilty leaving my father for too long, even though I FaceTime him when I'm away. If my husband and I had our druthers, we would be gone for 1-2 months sometimes, but I count the number of Sundays I would not visit him and feel bad that he would not see me for such a long time.

My dad is in good physical health, but of course, at that age, death can occur anytime. We never thought he would live this long (nor did he). It's great and I feel fortunate to have him around still, but I also feel so much responsibility and obligation.

I wish I could lead the life that my husband and I desire without feeling guilty and worrying about my dad. I fear losing him. I also don't know how his vascular dementia will progress. Conflicted emotions.

Need some support.

H1235 · February 4

Welcome. I understand! My mom also has vascular dementia. My husband and I are retired, but I am so busy managing everything for mom I don’t have the time I would like to enjoy my retirement. My brother still works, so he pushes everything onto me, since I have the time. I love my mom, but feel trapped, resentful, overwhelmed with responsibilities and then guilty for those feelings. This is not the retirement I had planned. I am also an hour away from mom and visit once a week. She still has her house so that is also a lot of work to keep up (I imagine you a dealing with that as well.) We couldn’t afford 24/7 in home care so we moved mom to assisted living and unfortunately later to a nursing home. She really enjoyed making new friends and having people her age to talk with. She also found group activities she enjoys. Everyone is different, but I wonder if a nice facility might offer him more entertainment and free you up to take an occasional trip. I’m glad you found our group.

lisn2cats · February 4

You are doing so much! Give yourself some grace. You're managing so many aspects of his life to keep him secure, safe, and feeling loved. Please, pat yourself on the back - you're doing an amazing job.

I hear you. I am the only child and suddenly became responsible for my 91-year old mom. It was, and sometimes still is, so overwhelming. For the better part of 6 months, I was so angry, resentful, guilty, sad, proud - all the emotions - all of the time - that I couldn't even cry. I screamed a lot in my car. For the longest time, it felt so one-sided — all my time and energy were centered around her losses, her needs, her frustrations, etc.

Thankfully, it was some of the comments and feedback from this forum that empowered me to take a breath and set my boundaries. Self-care keeps me being a good daughter. This includes having a "normal" life filled with vacations, spa days, social activities, and not worrying about mom 24/7. It's been a game-changer. I know that, for you, it's a little different since your dad still lives at home but I still think self-care and boundaries are important!

I shared my feelings with my mom's closest friends and the AL caregivers - and what a difference. I now have a group text with her friends. They schedule their visits amongst themselves, update me, and send selfies with her. (When she complains no one ever visits her, or whatever story she concocts, I tell her to look at her texts. Usually she's surprised when she recognizes herself and the surroundings and her mood brightens.) Her AL team gave me "permission" to stop checking in and worrying; they have me on speed dial (her primary caregiver showed me her phone as proof!) if they need me. They send me short updates and work hard to redirect her focus/attention if she starts going down that "where's my daughter" path.

And to beat her to the punch, I call almost every night before her bedtime (around 8:30 pm). I let her share her stories and complaints for 10 minutes then mention that I need to get ready for bed so I can be fresh for work the next day. And, without fail, remind her (she forgets anyway but I still do it) when my next visit will occur. It's become such a routine that she almost never calls me duirng the day unless she sees she missed a call from me.

I think (and I check this forum for validation) that, as long as she is being well cared for (via caregivers or facilities or other family members) then she can and will adjust. Maybe the dementia/illness creates a new sense of normal after the initial rollercoaster ride of emotions? I also remind myself that I am a good daughter and it's just the disease that is slowly taking my "old" mom away.

All this to say, you have support here (DM me whenever you need words of support!). You can only take on so much and sometimes you need to walk away for a bit, and that's okay.

YKL · February 4

https://alzconnected.org/discussion/comment/265268#Comment_265268

Thank you for your comments. My dad has always been adamant that he would stay in his house till the very end. Luckily, he has enough money to pay for home care. He loves his house and his privacy, although this type of living situation, as you said, does not provide the wealth of activities that assisted living would provide. I try to find activities, such as concerts, that he can attend with a caregiver. He used to play bridge, but no longer does this. This situation has made me think about what I want when I get to be old as we have longevity in my family. My grandmother lived a healthy life until the age of 103!

YKL · February 4

https://alzconnected.org/discussion/comment/265271#Comment_265271

Your post has brought tears to my eyes. Thank you so much!

April23 · February 5

Oh my, you are wonderful and what an absolute blessing that your father can still enjoy activities and be in his home at 101! That’s awesome. But I hear you.

My dad is in a wonderful MC RCF but there is still so much to manage. I’m also retired and although we’ve been able to vacation some, my family makes me feel very guilty when I do, and has even interfered while I’m gone, so much so that next time I plan to tell them all I will not be taking texts or emails and will deal with dad's facility directly.

Like you, if not for my dad, my husband and I would be gone for months at a time, that was always the plan. My dad has a catheter now and I'm afraid to leave now at all and have already canceled one vacation. It is hard for my husband and I as his parents are finally retired and want to travel with us and hubby wants to because he realizes how short time really is and doesn't want to miss out doing things with his own parents. He helps me so much but his own family needs him also. So very hard to manage.

We still have three healthy parents but realize now that they won't always be healthy and able to manage and it feels like we have years of caregiving still before us. It's very hard not to be depressed and we are struggling with it also.

Victoriaredux · February 5

"When am I going to see you again?" Their time isn't calculated like our time . I've had a visit and when I called later that same day they said they hadn't seen me in a long time . Best approach is agree and say you'll see them soon- then distract.

I don't think "guilt" is the right word , maybe regret that he developed that disease but no fault of yours. Enjoy your life- your Dad wouldn't want you to deprive yourself and your husband of the time you have to enjoy your time together . You never know what the future holds- your Dad is getting safe and good care.

Enjoy your life , you've got the bases covered with what is possible.

YKL · February 6

https://alzconnected.org/discussion/comment/265326#Comment_265326

https://alzconnected.org/discussion/comment/265358#Comment_265358

Thanks for your kind words and for sharing. It's nice hearing I'm not alone.

YKL · February 6

Thanks for pointing out the issue of time. It makes sense. The rest of what you said is true too. I need to live my life. He is well-cared for and wouldn't want me to stop doing what I want to do. Thank you.

SiberianIris · February 6

I completely understand the conflicting emotions. My mom is 97, and I'm in my 60s. When my mom was in her 60s, her parents had already passed in their early 80s, with no long lingering illness. Her retirement was spent traveling the world. She never had any eldercare responsibilities at all, not even the "easy" ones like taking them to doctors appointments or telling them they couldn't drive anymore.

Am I grateful my mom is still alive? Yes, but she hasn't really been 'my mom' for the past 5 years due to dementia. I mourn the loss of the person she was, but I very much love the sweet, childlike person she has become. It's painful watching her decline bit by bit, but I am in awe of her bravery and how she finds joy in the smallest of things now. Even deep into dementia, my mom is still teaching me valuable lessons.

I admit that sometimes I feel jealous of the freedom my mom enjoyed when she was my age, and how she could go anywhere without worrying about her aging parents.

My mom has logged 97 years into the Book of Life. I've logged 62 years, but I know there is no guarantee I'll get another year, much less another 10 or 20. That's why I refuse to carry any guilt for the times I take to "live a little".

yogiprincess · February 6

Hi - First, you are indeed a great daughter and your Dad is privileged to have you. I am on a very similar journey with my Mom - also living with vascular dementia. Lots of great advice here already, so I'll just offer up one more. Have you read "A Caregiver's Well-Being by Thomas Finn and Donna Finn? I just finished reading it, and it has been extremely helpful in managing the emotions you mentioned…like sadness, guilt, stress, resentfulness…etc. For the past year I've mostly felt helpless and alone…and reading the book helped me feel that I can do this and at the same time I can continue to enjoy my life until her last day. Best to you and your Dad!

YKL · February 24

https://alzconnected.org/discussion/comment/265430#Comment_265430

Thanks for the book recommendation. I will check it out.

YKL · February 24

Thank you all for sharing and for your support!

Feeling too responsible for my 101-year old dad with dementia

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