Do you have caregiver burnout or experience anticipatory grief? I’m overwhelmed and don’t recognize the person I’ve become.

Jellybean, you definitely have had a challenging, busy, consuming and demanding time managing your father's affairs. I wouldn't deny that the stress you feel is yours alone. I think most caregivers experience it at one level or another, and it is probably very common among caregivers. In addition, it does seem to get worse as end of life becomes closer.

But look what you've given him. For each task that has tried your mental and physical health, think of the rewards that it's brought to your father. And YOU accomplished that, you enabled it to happen so that his end of life experience could be better.

And now he is in fact approaching that stage. What I would do if I had to do it over again is what I actually did.

I focused on my father, on reminiscing if he wanted to, of just talking (father to daughter and daughter to father), of how much I learned from him, how much I admire his skills, and especially his self taught knowledge of metal and woodworking. I'd especially address how much I admire his tenacity, his determination, will and strength to overcome obstacles. And, especially important, what a basically good person and good father he is.

Don't forget to tell him that you were able to accomplish the things you've done for him because of the contributions he's made to your life. He enabled you to be the caring daughter that you are. And say those things soon; I was unprepared for how quickly my father would lost the desire and ability to speak.

Other than basic tasks at home, let the others go; there will be time for them after his life has ended. And the time from now on is better spent on something that can't be done later, and that's to spend time with your father.

Your last sentences attest to the love and pride you feel for being his daughter. Let those be the words he remembers as he drifts through the remaining time he has.

GardenArtist thank you for your response. I feel so cut off from the world I used to know. Thank you for recognizing the tasks, they were exhausting. Hospice has told me to stop trying to force him to eat. That his body just doesn’t want food anymore. So that’s hard... me not trying to fix everything. We had a lovely visit today. Probably the nicest since he’s been in AL. It was a real visit. I didn’t try to tidy up his apt or anything. Just focused on dad and the lemon meringue pie we took over. Then we took him (in his wheelchair) for a stroll outside. Took some lovely photos too. I’ll treasure them. Thanks for your understanding and kind words.

I agree that being POA/trustee is a thankless job. when I mention anything to do with it around my mom, she does say 'thanks'. I had responsibility of both parents until my dad passed in 2015. now just have my mom. I know I feel great honor taking care of my parents needs. but then there is that creeping feeling of being overwhelmed. especially sometimes I fear I will mess something up.
sometimes i just don't want to have to deal with everything any more. but its been helping coming to this site. and reading everyones posts.

im glad you had good memories today. no one can take that away.

I pray for you and your Dad, for the ease that might come now with days that are numbered. I'm caring for my 92 yr old Mom who's in great health (takes only supplements) and is very present, even though she has huge memory loss...and I'm OFTEN driven to anger and frustration. So I can only imagine. Kindness to both you and him ... there's nothing you can do about anticipating or experiencing loss. And months later when you think you've gotten over the sharp part, it will hit you all over again. See the child in yourself? especially the one that your Dad cherished. Blessings, Nicole

Sorry, I really didn't address the question of your thread.

Yes, I definitely was burned out as Dad approached the end of life, much more so than before as I knew what was coming. Even though I decided to focus on making his life as rewarding as it could during the time remaining, I still feel I fell short b/c I was so physically and emotionally exhausted. But I did the best I could, especially in finding a good facility for him, in helping with the dysphagia care, in working closely with and sometimes demanding explanations or changes if I didn't agree with some aspect of the care. And that takes an emotional toll in itself.

Anticipatory grief is I think inherent in caring for someone at the end of life. In retrospect, I would say again - say what you need to say so that you don't have regrets. Put other life issues aside; he's a higher priority.

And don't plan a lot of work for post death activities. You may be so overcome that thoughts aren't clear and planning is difficult. If you can, identify what immediate tasks have to be done, start them if you can, and when he's gone, remember those that need to be immediately addressed and those that can be deal with later.

JB, I too felt isolated, as if I was living in a world that consisted of my father and I, and the nursing home staff. Sometimes hospitals and doctor visits were added, but primarily for the last few months it was just a limited interaction with the outside world.

Although I wouldn't call it a form of sensory deprivation, in some ways it was because what would be considered a well rounded life and interaction just weren't present.

And in some ways I have to remember how to interact with people who aren't in medical positions. That can be a strange experience.

I'm glad you had such a nice visit today. These are the visits that hopefully will remain in your mind and crowd out other less pleasant activities or experiences.

Hang in there, and try to live for the moment.

Hi GardenArtist! Guess what? My husband surprised me with reservations at the beach for 5 days starting next weekend. I asked my sister if she’d be available for dad and she said yes! I have mixed emotions about going. But wanting to get away is stronger than the rest. I’m only going to be 2 1/2 hours away from dad. I’ve talked to hospice and if anything should happen while I’m away they will not move him till I can make the 2+ hr drive back. I’m getting a break... God willing 🤗

Not to pile on, but being Executor of the will is also a drag. I was not executor— but I did the lion’s share of the legwork for my parents’ estate. (I live the closest to parents’ home and other financial interests. The executor lives out of state.)

Took 2.5 years to close the estate. No infighting. Just red tape, the occasional missing document and the vagaries of the real estate market.

During the estate process, the dead parent keeps (figuratively) popping out of the grave. I don’t really “get” or believe in closure — but for those who do, the estate process is the opposite of closure.

You pay for mistakes you didn’t know your parents were making. They might not have known, either.

A word to the wise: Anyone over a certain age (60? 65? 70?) with rental properties needs to turn them over to a management company. Pronto. Don’t be lulled into thinking that retirement is the best time to be a “hands-on” landlord. It is for a hot minute. Then the health sh*t creeps up. Aging brains aren’t a good match for all this responsibility, either. 

Then you die, and your hapless kids are reaching out to these total strangers (tenants) — giving them a new address to send the rent to and a new phone number to call when they need something. “Just until the buildings are sold.” Just shoot me. 

Indeed, the tenants will call. The vultures first. But in due time, they will all find a way to “register.” Mom & Dad ran credit checks on these folks, but not personality assessments.

The tenants will look for a weak link. Hint around that they are free to break their leases. (They are not). Call to rehash something that was not fixed to their satisfaction 6 years ago. (As if I knew.) Will call with the “I never wanted to bother your parents with this, but....” (Sure, bother me.)

You will most definitely hear from the tenant who says Dad said he’d sell him the building for [insert insultingly low price here], but they never got around to doing the paperwork.   **cough, cough**

I almost forgot — tenants will also have legit emergencies while they are on your watch.

If my folks had gone with a management company a few years back, there would have been a barrier between the tenants and us heirs. And truthfully, the buildings would have had better maintenance in the last XXXX years.

Oh, the half-baked repairs of the the last XXXX years. Cuz dad was in the hospital so mom subbed out the project to dad’s fishing buddy. Or dad started the project but couldn’t finish it. So the tenant hacked away at it in exchange for a rent reduction. Etc etc etc.

Worth noting: These are the years when we’d talk to the folks on the phone, and they’d say everything is fine. Just great! 

My point (and I have one) is: I had plenty of anticipatory grief. Had it for years before I even knew what to call it.

But I did not have a clue how draining the estate process would be. I thought, oh crap some paperwork bla bla. Ha! The reality was much, much more. And dragged on for so long. 

And we were blessed to be heirs who were in agreement. Can’t even imagine what that process is like when there is infighting.

Jellybean, I am an only child and went through the many crises and ups and downs for years. I cared for my Mom who in the last 2 years was bedridden in my home with multiple health problems. It got a little better when hospice came on board, but most everything still fell on me. One of the many rough things was the constant ups and downs...my Mom cycled through end of life symptoms for nearly 2 years and I felt like I was always bracing for the end....then it became bracing for the next medical crises. It wiped me out along with the coincidental sale of a family business at the same time, then the estate process. Thankfully I had a very good attorney. It has been 2 years and I still deal with anger issues about the whole decline of my poor Mom. I know I did well for her, but I feel I am not fully back to myself yet. You are doing a wonderful job of caregiving for your Dad. Take time to do even little things for yourself as the little things add up too. You are in my thoughts and prayers.

It seems everybody in this forum has their mom or dad and live to their mid to late 90's. My mom's Alzheimer's is so bad it is doubtful she can survive beyond 89. and I am having frequent nightmares about getting killed in my dreams. I'm very attached to my mom and I am terrified of losing her. I know it's going to happen and there is nothing I can do about it. Everytime I go to the store I think of the good times which are long gone when my mom and I used to go and she was able to walk and converse with me. That person is long gone and dead. Prolonged grief? I'm a constant nervous wreck as I watch my mom die slowly of Alzheimer's.