I have been caring for 95 year old mother for years. How do I maintain my compassion and patience?

MsGio - I feel your pain totally. I have been staying with my mom since June. For awhile I had a sublet in my beloved apartment but it's empty again. I keep paying the rent on it because it's my home and I'm determined not to "settle in" at mom's. No other family help - brother lives 350 km away and doesn't even phone her. I was getting very impatient with mom, too, and definitely felt my compassion was slipping away. And yes, there is part of me that deeply resents how she has no idea what it's like to be a caregiver for an elder parent, because she never had to do it.  Plus I have a disability that makes every physical thing I have to do for her very painful for me.

What's saving me is home support. I don't know if you can manage to get some more, but honestly, they are my everything. Where I live, in BC, Canada, the cost is on a sliding scale based on the patient's income. Now that mom is palliative, it's all free for us.  Before mom was palliative, we could afford 2 visits per day on dialysis days (3x/week).  Even that helped me a lot.  Now we get 2 visits every day, plus morning visits on mom's dialysis days to get her ready, plus I get two 4-hour respite blocks per week.  This makes a HUGE difference to me.  I'm using one of the respite blocks now - I'm at my apartment! It's amazing to be here.

The best thing about having so much home support now is that it gives me more freedom to be mom's companion and daughter again. I still get a little impatient from time to time, but for the most part, I am able to be calm, kind, and supportive.  And I mean, it's not even that MUCH home support - probably 20-23 hours per week - but having them come 2-3 times a day, EVERY day....having them change her, bathe her, toilet her, clean her bum, deal with her dirty Depends, deal with getting her to eat and take her meds, change her bed linen....it really makes a huge difference in my outlook and my emotional well-being.

Plus, well, I have to be honest....she is nicer to them, and more compliant.  Whereas she has been very stubborn and sometimes even nasty with me.  And the workers, in turn, have a lot of experience and wisdom in dealing with all kinds of people in home care settings.  I don't have to fight mom on every little thing anymore.  (Like getting her to take her meds or change her Depends.)  With that mostly off my plate, we hardly ever argue and things are so much more peaceful. 

From what I understand about health care services in the USA, everything the patient qualifies for is supposed to be based on THEIR assets and income alone, not on the rest of the family's. So you may want to do some research and find out if your mom qualifies for some more home support coverage, based on her income, not yours. Perhaps it would even be worth it to do a reverse mortgage on her home, if that's what you have to do to get some respite and extra home support.

Oh msgio62... I feel you are singing my song! I've been reading here for sometime now and it definitely helps my heart. After posting once I received many wonderful responses but I left the site immediately upon getting a long message about being a martyr and my mother's will essentially being none of my business. A lot more than that but I think my own feelings are too raw and I'm sure I was too sensitive..After all I posted on a public site.
Mostly I want you to not leave the forum as there is a dearth of helpful info these wonderful caregivers have to offer. I left and I miss it !!! You know what they say --- take what you need and leave the rest!!!

I also live at mom's while my empty house sits empty...
My husband travels for business and comes to mom's when he's home between jobs... luckily my kids are grown ( 20s and 30s) ..I miss the grands but my daughter is good about bringing them to me here...

My siblings are my biggest issue by far .. complete lack of any participation.. quite the opposite as they are both concerned with conversations about inheritance.

I'm sorry to go on so long but the part that stays with me is you wrote your mom didn't take care of your grandmother. My mother did the same for her mother and MIL. I can remember the convo... I was a young mother of 4 at the time and I remember her telling me she said absolutely not.. she deserves her own time and she wanted to shop and eat out and travel with my dad. She emphatically stated she was not going to be tied down just when she got an empty nest !!!! It's 2018 and I only leave HER house to food shop..her doctors and her Walgreen... Can you say ironic....it's my biggest resentment and I have to swallow it daily.. when I asked her about my nanny and my grandma she told me nobody likes a know it all with memories and and she doesn't like to think about those days ... I asked her if candid camera was here and she pretended she didn't understand. Let me stop before I start another chapter.

What we are doing matters !!! I'm proud of you !!! You are doing a great job !!! Sending you good vibes !!!!

Thank you all for your responses. I appreciate it very much.

Hello, someone posted the question to my post "is this elder abuse?" Is it? when I state that I argue with her at the moment I feel impatient because she will not compromise. it is not an "argument" in the sense of the word as yelling or a huge back and forth. It is me trying to get her to just say "ok", I'll go with you or "ok, I will do that. I feel frightened now that I have put myself out there looking for answers. We are doing all that we can financially to keep my mom in her home, using the equity to have paid caregivers provide some relief.

I think you should give yourself some credit for the fact that you’ve already been looking after your mother for years, well done for that

To maintain your compassion and patience you must first--FIRST--take care of yourself. I took care of each of my parents without learning this. No one ever suggested it and it never occurred to me.

I have heard a lot about "self care" and thought it was feel good schlock. I learned the hard way that it is not.

When we give and give and give we have to have something to replace that with. Something emotionally nourishing, maybe spiritually nourishing depending on what your beliefs are. "Compassion fatigue" is very real and can deplete a mind, body, and spirit very quickly if we don't take care of ourselves. This is not a luxury but a necessity.

Sit down with a good book. Meet a friend for coffee. Take a nap. Watch a movie. Take a walk. Incorporate things into your routine that you enjoy. It may be difficult at first. You may be trying to enjoy a good book and be thinking of everything you have to do. Keep reading. Train yourself to care for yourself without guilt. Once you burn out, and you will if you don't achieve some balance, who will care for your mother then?

Dear MsGio62,

I know its hard caring for an elderly parent. And it sounds like you have a lot on your plate with your own family and your own health. It is a lot for one person to take on and only normal to lose patience.

Are you able to get any respite care? Have you considered talking to a social worker?

For myself, I never realized how much anger and resentment I had till I started losing my patience easily. It was a red flag. I needed to make changes but I felt so trapped. I just kept going on in this vicious circle.

I think I should have talked to a family therapist or sought out a support group earlier. Oh, how I wished I had found this site earlier. I think I could have managed my father's care better.

Your mom is so lucky to you. You are such a good daughter. Thinking of you.

MsGio, sometimes we need to do what is best for our aging parent whether he/she likes it or not. Did your Mom say she wouldn't go to Assisted Living or to a Nursing Home, or are you thinking she wouldn't like being there.

One need to remember that not everyone is cut out to be a caregiver. I knew I wasn't, but I was good with the finances, arranging appointments, getting tradesmen to Dad's house to fix things, etc. https://www.agingcare.com/articles/not-everyone-cut-out-to-be-a-caregiver-162192.htm

Does you Mom own her own home? If yes, do you know how much equity is in the house? Would it be enough to cover say one year of Assisted Living, which averages around $5k to $7k a month? Then later you could check on Medicaid [which is different from Medicare].

My Dad was in Assisted Living and he really liked being there. He was just so glad not to have to worry about his house, the house insurance, the utilities, constant repairs, shoveling snow and mowing the lawn. He loved the food at the facility, just don't get in his way when it is time to head to the dining room :) And the best part, he was around people of his own age group. He felt better, too, because he realized he wasn't the only one using a walker !!

Are you a senior yourself? I was in my late 60's when I was helping out my parents, they under their own roof, me under my own. I found out very quickly that seniors shouldn't be caring for older seniors. I remember one time I had back issues and had to use a cane. Imagine what that looked like with all 3 of us coming into the doctor's office each with a cane :P