May 7, 2015

A Different Mother's Day Post -- 5 Practical Tips for Caretakers

NOTE:  Not stamping related! 

Some of you are daughters taking care of your mom.  Or maybe your dad or husband or sister. (The tips refer to moms, but substitute as needed.)   Or maybe you are thinking about doing so.  If so, this post is for you.

As Mother's Day approaches, I have mom on the brain.  If you've read my previous blogs, you know that my mom lived with us for 19 years.  For the last 5 of those years, she needed serious care taking.  After that, she spent a year and a half in a nursing home before she died.  I can now look back on those years and thought I'd share a little of what I learned.

1.  To the maximum extent possible, let your mom make her own decisions and feel important. 

Losing control is scary and often does not bring out the best in people.  The more my mom lost control of her life, the more she made ridiculous demands requests, like wanting fried green pepper sandwiches every day for months at a time only to be followed by THE YEAR OF MACARONI AND CHEESE.

It helps to ensure that they make as many decisions as possible.  Mom can't blame you when things don't turn out, and folks have the right to decide their own medical care, what they wear, where they live, when they take their pills, etc. -- as much as possible.  I disagreed with many of my mom's decisions, but they were hers to make and in the long run, it made my life easier. 

My mom, like a lot of frail elderly, felt useless.  But she blossomed when I asked her advice about anything -- making meatballs, something about my kid, etc.  It made her feel useful and needed.  (Hint:  she doesn't need to know that you didn't follow all of her advice....).

2.  If your mom has frequent medical emergencies, keep an "ER" bag packed.

My mom went to the emergency room over 40 times over a 5 year period, so I became a pro.

Include in the ER bag:
  • three copies of a list of her medications, including dosage and frequency and a summary of her medical issues.  You don't need a novel -- a paragraph is fine.  
  • three copies of your mom's basic info (social security number, birth date, address, and name and phone number of her treating physician);
  • three copies of any advance directives/living wills;
  • three copies of YOUR contact info;
  • Keep in mind that most doctors no longer treat their patients when hospitalized, so you will be responsible for the continuity of her care.  Give one copy of the above papers to the paramedics after they arrive, one copy to the nurse at the ER, and if your mom is admitted,  one copy to the nurse on the floor.  If you leave the ER before your mom is transferred to her room, tape a copy to her bed;
  • a photocopy of the front and back of her medicare and insurance cards for the hospital billing office;
  • a blanket for your mom and a sweater for you (it's ice cold in there); 
  • a paper cup (so you don't have to wait for a very busy nurse to give her something to drink;
  • an extra cell phone cord for your phone; and
  • some food for you and your mom.  
Depending on the nature of the emergency, you may not need some of these but they are good to have.

In addition, on the way out the door, I would grab some of my mom's pill bottles and would TELL the ER doctor or nurses that I was giving my mom her regularly scheduled pills (this is why bringing a plastic cup is useful).  ER docs don't order blood pressure, routine pain pills, or meds like that unless needed to cope with the reason for the emergency.  For example, my mom had gout and if she didn't take a particular pill every day,  it would flare up.  I learned the hard way how important it was that she stay on her regular pills.

The docs never objected and often told me that I was smart for bringing them.  Just make sure you tell them in advance!

3.  Make peace with your sibling issues.  

It is not uncommon for one child to be the caretaker and watch siblings scatter to the wind.  Your brothers and sisters may refuse to help pay, may not have the money to help out, and/or may rarely visit or call.  Expect it.  If the opposite happens, rejoice. 

It is also not uncommon for the parent to idealize the non-helping kids.  It can be a source of tremendous resentment.  I kept my mouth shut about my siblings in front of my mom, although there came a time when I had to intervene so that what was left of her money stayed out of my brothers' hands.  But most of the time, I let it go.  You have enough going on without adding that to the mix.

4.  Speaking of money.  If you are taking care of your mom's finances, be prepared for someone to question where all the money went. 

It can be your mom, your siblings, or the government (if your mom needs Medicaid or other assistance).  Eventually, some one is going to want to know where the money went and he or she will be looking at you.  There is plenty to spend it on.  But, keep good records, particularly if she sells her house or car.

5. Don't feel guilty over sometimes wondering when your mom will die. 
Yup.  It happens.  You aren't a murderer; you are a daughter.  A very tired daughter.

When a friend told me she googled her own mother's life expectancy because she couldn't imagine caring for her much longer, I realized that I wasn't the only one who sometimes wondered when my mom would die.  It helped to know I wasn't a bad person for thinking like this.

Don't waste your time feeling guilty for these feelings.  When my mom died, I was both devastated and relieved.  I was relieved that she was no longer so miserable.  But a part of me was also relieved that I was no longer consumed with her care.

Now that my mom is gone, parts of my life are much better, but I still miss her so much, much more than I thought I would when I was in the middle of it all.  We love our moms, but we are human and complicated. 

There will come a time when the care taking ends and all that will have mattered is how you acted, not how you felt. And you will miss those days (well, some of them) and your mom.  A lot. 


Valerie said...

Thank you! Printing this for future reference.

Betty said...

thanks Joan - i remember well your posts when your mom was with you - maybe i'll print this out for my kids when i get to that point when they may need to take care of me - not that is what i want to happen, but one never knows.

Joan B said...

Betty, my son no longer lives in this area. Once we get older my husband and I are likely to be looking out for each other! After that, who knows! YIKES

Lisa Silver said...

I remember your posts about your mom and the challenges... and it's really great advice.

We had my mother-in-law with us for a couple years part-time before she was put into a nursing home. While a blessing to spend that time with her, it was incredibly hard. I didn't sleep and worried that she would wander the house at night. We saw her Alzheimer's progress and I witnessed the sadness for my husband and kids that grandma was forgetting them. These are all great tips and ones I'll remember (but hope I never need for my own parents).

Unknown said...

Joan this is all such very good advice, wish I could rewind a bit and use some of it - hugs to you.

Mary W P said...

I'm in the middle of all this and always appreciate your thoughts on this subject. Thank you for sharing from your personal experience.

Debbie Olson said...

{{{Joan!}}} Understanding this better than I wish. . . Love your wisdom too!

Kelly Latevola said...

♡ that is all.

mtscrapgal said...

Thanks for these practical tips. I took care of my cancer riddled daughter for 3 years and had some similar experiences. I also learned some of these things. Thanks you so much for sharing your heart with us.

Deborah Frings said...

I remember reading posts about your mum before. Thank you for sharing this, I am going to keep it for future reference . Hugs xx

s said...

#2 was especially helpful. Thank you for your insight and willingness to share. I am also in the middle of this with my mom, and there are some days.......well, you know.

I wish you peace, Joan.

Glorie said...

Thank you for this post Joan. My mother took care of her mother. Because of the stress, my mother had to take early retirement, was diagnosed with depression and had to go live in the province for the remainder of my grandmother's life. I resented that, and was angry that her siblings did not help out.

Anonymous said...

Such wisdom. Hard earned wisdom. Thanks for sharing it. I am deeply touched and relate all too well to what you have said. We are now in the early days of our second round of parental caregiving. Your words are right on target and helped me put a lot of things into perspective today.

Karenladd said...

Having gone through years of handling my own mother's finances and healthcare, and even now still trying to complete the closing and distribution of her family trust, so much of your advice and wisdom rings true. I also packed a magazine for me to read since I would often spend up to 7 hours in the ER with her at a time. Thanks for sharing this with us as so many are experiencing a similar situation. It's always tough and not always rewarding as we know.

Joan B said...

it can be difficult but it does help to realize that there are so many sharing the same experience. thanks for your thoughts

Joan B said...

thanks for taking the time and best of luck in dealing with this a second time.

Joan B said...

Wow. There are so many consequences for others. I haven't written about the effect on my husband or son to protect their privacy, but that's a whole other thing. I can understand your anger at your mom's siblings. Thanks for sharing.

Joan B said...

And I wish you peace. For real!

Joan B said...

Thanks for taking the time to comment Deb.

Joan B said...

Aw that is so sweet.

Joan B said...

I'm sorry for your difficulties. We do the best we can! Hang in there.

Joan B said...

and thanks for taking the time to share. good luck working on these issues.

Joan B said...

We all wish we knew then what we know now! Hugs to you too.

Joan B said...

I hope you don't need them for your parents either. I remember you writing about your MIL with such love. She was lucky to have you help care for her. Hugs

Joan B said...

I suspect that caring for a very ill child would be different in some ways and identical in others. My heart goes out to you.

Joan B said...

Thank you for reading and commenting.

Anonymous said...

#3. Make peace w/ sibling issues.

Joan, the way I was able to make peace w/ the comparisons of what I was doing and what others weren't was to remind myself "If I were an only child, I'd be doing this anyway." Didn't change the situation, but it changed my attitude.
Nance in Reno

Carol Cel said...

Thanks for sharing all this -- Especially #5 - I feel guilty when it crosses my mind.

Joan B said...

I used to as well. I guess it is human to think it and human to feel guilty.

Joan B said...

Thanks Nance. Glad it was able to change your attitude.

Susan Raihala said...

Thanks for this post, Joan.

Anonymous said...

thank you for your thoughts and ideas - much appreciated.
oh - and I really enjoy your blog too