My dad (82) has noticably had dementia for at least 6 years. He also has hearing and vision loss, seizures and broke his hip last fall.
I am a 38f, married with two kids and live out of state. I also work full time. After my dad broke his hip last year and has become dependent in every sense of the word, I come at least 6x a year to spend time with my mom and help.
My dad thought ahead and luckily has long term care insurance so my mom has a caregiver at home 5 days a week for part of the day. Still I know this has been so much sadness in watching her spouse slowly decay and most of her life is about him now. Not to mention the constant worry and anxiety about the future.
But the burden on me and my brother and is still significant. In addition to visiting regularly, I take care of their finances, day to day paperwork, finding caregivers, filing insurance claims, finding repairmen, ordering things from Amazon...etc.etc. not to mention talking daily with my mom, during which she emotionally dumps on me and asks me very little about myself. it takes up at least 5-10 hours a week. I also either bring my kids or leave one behind during my travels.
I could handle it if my mom wasn't always so anxious, looking for me to make her feel better. And that's not limited to my dad. It's about anything that happens in anyone's life. In short, I'm her therapist. No matter how great or poorly things are going in my own life, this is always playing out in the background.
I feel like I have simultaneously lost both parents while they are still a burden. It's a tough place to be. Reading so many of the threads. I know people have far more to deal with and so I greatly empathize and salute you. We are all doing our best.
I know it's rhetorical to ask, but when will this end?
Im so damn tired of everyone’s crap. It just never ends.
I am so sorry to read this. I hope your daughter is managing.
I am seeing it for the first time. I think this stress will continue to be a challenge.
Two things:
1) Hopefully your brother is putting roughly equal effort as you are?
2) Who is around locally? Friends, neighbors, religious groups ? Is there anyone locally who can spend more time with your mom and help to do some of the daily reassuring to help the anxiety? As your dad ages further, that may well lead to more and more anxiety for her...
1) yes, he's always been helping, we just do it in different ways. He comes to see my parents once a week and assists with doctor's appointments and taxes. he doesn't get as much as my mom's emotional burden but we all have different relationships and can't expect things to be equal in every area.
2) my mom has a network of friends and wonderful neighbors who have come and helped in times of need but no other family. Luckily things have gotten better on her anxiety front, only for us to be met with the news that we may need to start considering hospice. It always feels like it's something.
I've written more about it here: https://www.agingcare.com/questions/question-about-dads-swollen-feet-and-hospice-485667.htm?orderby=oldest�
At some point you will have to make a choice for yourself and explain to your parent you have done so, and why. And allow both yourself and parents to mourn, then choose the safest and best placement you are able.
Truth is this may not END of it's own volition for decades.
After dad fell and broke his hip, he had no other choice but move into Assisted Living. Mom insisted she wanted to stay alone in their independent living apartment where I'd be responsible for EVERYTHING on her behalf bc she was really a child. Plus her fears and anxieties would've had her calling me 100x a day, and I also had dad to deal with in AL and they couldn't afford 2 rents. So off she went to live with dad in AL.
Best decision EVER bc it calmed her down tremendously. She had others taking care of dad, meals cooked for them and served 3x a day in a beautiful dining room, entertainment, happy hour with a band on Fridays, her apartment cleaned, laundry done, gardens to stroll, exercise, etc etc. She was in adult day camp and I was paying all her bills. She was happy as a pig in poop.
Dad died 10 months later. The women folk scooped her up and brought her back to life. Took her to meals in the dining room, to activities, excursions on the mini bus, shopping, etc. Her grief was very well managed due to her support system in AL. I shudder to think what would've happened had she not been in AL.
I know your 73 yo mother is not so open to AL. It may be THE best thing that ever happened to her, as it was for my mother. Your father has the long term care insurance......you might consider giving it a try.
Best of luck.
If your parents can afford it, a nice AL may be good for both. Mom won't have full care of Dad. No need for her to cook, clean or do laundry. One bill a month to be paid.
All of us need to plan so we don't become a burden on the ones we claim to love most. My parents didn't do it, and it was a miserable mess for me to manage. I've done a good bit of planning for myself and continue to do more. I've discussed it with my adult kids, and they're grateful for that.
Let's do it right so there won't be so many ruined lives, financial issues, uncertainty about where to "put" us when we can't care for ourselves, and let's make plans for what will happen to our pets. Let's do it NOW!
What we didn't prepare for, is how to deal with this emotionally and the toll one person's loss of ability can have a ripple effect on a whole family. My mom was also never really involved in managing finances which has presented issues now.
I should also mention she is 10 years younger than my dad, so a AL center does not seem appealing to her. I think if my dad continues on we will have to put him into a facility which my mom has worked so hard to prevent. I could also do without the daily emotional dumping especially when we have the resources to put in more help than we have.
In short, it's a tough situation for us all. I just didn't realize that having one parent down for the count would result is such a burdensome feeling for us.
I do hope to prepare logistically so my kids don't experience this same thing, but we never know what life hands us.
If it were my mom, I would look at getting her something for the anxiety. It will be hard, but you need to set some boundaries on her using you as a therapist. Maybe you can get her a real therapist instead of you being her one and only person to dump on. No thanks!
My mom is in AL after 7 years of living with me and hubby. Her dementia is getting close to consistently moderate with some mild moments still. I'm taking away her cell phone tomorrow and installing a landline that is going through a service called telecalm. I hope it works!!!
Good luck to you.
And as she gets frailer and more scared, her neediness --which is understandable--angers and suffocates me. Yes, I am her therapist and I have to show how glad I am to see her each time or she feels my reluctance and panics. And this is even knowing what I know and taking good care of myself...it just feels endless, and it is the NOT KNOWING that creates so much fear and anger in me.
"When will it end": The hospice nurses cannot tell me. No one can. And the saddest part is that I just have lost my love for her over this time and enjoyment. It is drudgery and complaints and money, money, money. I am just emotionally, financially, mentally exhausted by all of this. Seven years plus of managing all aspects of care you mentioned...it is horrible to want someone to die and yet in this forum I see that theme again and again.
I will say my mother's anxiety was really getting bad and she is doing well with Xanax and Zoloft as a combo. It really has helped a lot.
But there are some things meds cannot fix, and the anxiety of growing old, caregiving, not knowing your future...that cannot all be medicated away.
Best of luck to you--you are NOT alone.
Younger-Older age can be a time of less worries, maybe less financial pressures, childrearing is done etc.
Then the OLD-Old age comes. Bringing so many unwelcome things! Sudden falls & broken bones, illness, brain changes.
Also covertly taking - dimming the eyesight & turning the hearing down. Stealing confidence & planning ability, leaving higher levels of anxiety.
A friend of mine found his Mother beoming inceasingly overwhelmed. New anxiety over handling her daily life, bills, home. He took her by the hand (figuratively) & led her to her next home - they toured then chose a nice Aged Care Village type residential home (with continuum of care).
The anxiety had been mostly situational - as her independance level no longer FIT her living arrangement.
Now with the daily help, meals provided, bills & appointment scheduling given on to others, it FITS better. She can be free to be as independant as she can in her own space. Join groups & socialise again, something she was losing before.
BeeBee, seems your parents need to really consider what they want & need now. Is it more & more services to allow them to stay in their home longer? Or it is time to find a new home? Togther while they can. Where Dad can be supported by aides alot more & Mom able to bring her stress down.
Thanks for your words. Much appreciated.
So--being told 8 months ago she was going to die in 2-3 weeks and having her here after all the drama and handwringing--it's kind of lost its 'power'. We just don't get upset over anything.
I'd try to help mom--some antianxiety meds may help her to ride through this with a little better outlook.
I'm so sorry you're going through this. You are most assuredly not alone.
I think you will need to know that this is ongoing and to accept that. You have to be well aware of it, and aware it is getting worse. You and your family should not be speaking TRUTH to your Mom. She SHOWS by her level of anxiety that she already knows she cannot go on with this much longer lest it kill HER first (and it well may any day now). Her anxiety is appropriate to her situation, as are all your feelings.
I am so sorry, yet I cannot help but applaud you for the work you are doing so far. And to wish you the best. At some point, without the intervention of the grim reaper, Mom will not be able to sustain this at home. Time, when you visit, to be honest. Crying about it is fine, but some things cannot be fixed. I just am so sorry.
Keeping them in their home may not be the best idea. Much of the work you do for them wouldn't exist if they were in assisted living and/or memory care. It's time to reassess because this could go on for quite some time.
You are in a situation where you may be expected to take mom into your home if dad needs care elsewhere and moves out. Don't do it. Mom has to go to assisted living.
What you've already painted is a picture of an elderly women who has not taken responsibility for running her own household or life, even though she has home care for her husband. She has shunted all of that on to you. Yet many women in her position and age group do it all and do it well. It's likely that she will expect you to go on doing it as long as she lives, and you don't want that! So be aware and plan ahead. You don't need a lifelong leech who will suck you dry. You deserve to get your life back!
I wish you luck.
Your mom needs a workup for her emotional state.
I don't know if mom has always been fretful and anxious, but this is NO NOT "expected". Either she has something going on that requires therapy and medication OR she is experiencing some cognitive loss which is driving the anxiety.
The current state of affairs can't continue.
In your shoes, I would schedule a neuropsych workup and see if perhaps they BOTH need to be in AL.