Waiting for a crisis - one thing we'll all do sometime

Speaking with a friend last night I realized that there is one basic thing that nearly all of us share when it comes to dealing with elderly family  - that is the waiting for some crisis event which forces a change for our loved one.  We wait for the fall that puts mom or dad in the hospital and then the nursing home.  It's the stroke or heart attack that signals the start of their decline.   Or, it's the car accident that means the loss of a drivers license and cancellation of insurance.

Elder care professionals call these "sentinal events" - some event that is often a tragedy and that means a big change in the living conditions of our loved one.   Most often the outcome of these events means drastic change or a tragic outcome  Think of the stories we read of elderly people found wedged for days between their toilet and the wall or someone who's fallen and never got up.  After waiting for so long we can only react to the circumstance; there are only a few options left by the time an event occurs.

Why do we end up waiting?  It's because we have no other option.  The parent/elder is not sick enough to be hospitalized or might have a chronic condition.  She or he might be right-minded enough to say "leave me alone" or there just are no funds to help provide any assistance to prevent the incident.   We WANT to respect our elders so we respect their need for independence. We don't want to hurt their feelings or pride or our relationships so we let things be.  We know something will happen, it's usually only a matter of time.  We wait and wait then deal with the outcome.

The waiting is hard.  We see the decline, the weakness, the potential; we know something is coming but we don't know what or when.  We grow anxious, we get stressed, angry or frustrated but there's nothing we can do.    In some ways the waiting is easier because if we let things go long enough the options for our elder are limited.  Their condition may be such that a nursing home or hospice is the only option.  I have to ask myself if this is so bad.   We might do things that prolong the life of our elders but what about the quality of that life?  For me, I'm glad my Mom was in her home for years and admitted to a nursing home late in life.  She was surrounded by her family, her favorite sentimental things, her own roses and friendly neighbors.   The house didn't get as clean as I'd like, the lawn was under-watered and the flowers often gangly but she didn't care. She was simply happy to be there.   So I had to be satisfied that she was content and worry less about the time she had left.  We chose to put her immediate happiness first.  It was hard and I often worried but looking back, I'd do it again the very same way.
What is a sentinal event , when should I move mom dad , mom doesn't want to ove what do i do , dad doesn't want to move what do i do ,dad won't stop driving what do i do 

Talking on the phone good for Mom but makes me crazy!!!!

When I can't visit my mom I try to call every couple of days.  This has become torture for me and those around me because Mom just can't hear.   She won't wear a hearing aid and the longer she talks the farther down her face - and away from her ear - slides the phone.   After 15 minutes I end up screaming the same things over and over, finally saying "never mind".    When i want to hang up it's a three stage process.  Stage 1, I tell her I need to get going for what ever reason then she asks what we'll be doing for the next few days.  Stage 2, I tell her I need to get off the phone for what ever reason, then she tells me what she's been doing - this is all after about 30 minutes of the very same conversation.  Stage 3, I tell her again that I'll have to hang up and she asks again where we'll be going next, her voice waivers and I can tell she's ready to cry.   By stage 3, she is asking, what? what? again and I'm yelling the same thing over and over...  I'm ticked off, my voice is louder and the tone lower.  Anyone around me is ready to grab the phone from my hand and slam it to the floor.

It's like having a little kid, I can't be mad at her because she just doesn't understand.  She NEEDS the calls and the company. She can't hear well, she's just happy to have a conversation with someone she loves and she knows loves her.  How can I rush that?  How can I hang up?  How can I NOT feel like crap for getting so frustrated.  I can't; it's just one of those things I have to live with .  I try to call her only from home where the only ones bothered are my husband and me.  I know it will take 3 tries to get her off the phone and I know she'll get weepy so I brace myself and get ready for the stages.  When she gets to the point that we DO NOT go through all 3, I'll know something is really wrong. 

Memorial Day at Mom's house was nice, she didn't mind returning to care center

Mom's been asking to see her little house and yard but we've been afraid to take her home.  We didn't want any sad crying scenes or to send her into a seizure if she became too upset.   We've tried to avoid excuses and honestly, it's been too cold or too wet for to take her home until this weekend.   My cousin came over, we picked flowers from her garden and made bouquets for family graves then went to get Mom. She sat in the car while we left flowers on graves.  She got to see each bouquet and know that roses grown in HER yard honored all those we loved. It meant a lot to her. We joked briefly that we placed more bouquets on graves than we had people coming for lunch - a sad statement...

After the cemetary we went to her house where my brothers and other family were waiting.  We had a nice lunch and all sat together at the table with Mom at the honored "head" spot.   She was very happy and ate a good healthy plate of food.  She was especially happy to have coffee and pie after supper - she doesn't get much pie at the nursing home.  

When talking with her before going to her house I used my mantra:  "it's not safe, the wheelchair is too big, the bathroom too small, the doorways to narrow, you can't be alone anymore..."  She can't argue with these..   Mid way through the day she had to use the bathroom so I helped her. I had a plan to do it and walked through it a couple of times the day before. My plan meant moving her from the wheelchair to a seat on a walker then onto the toilet.  We did the same routine backwards to get from the bathroom back into the wheelchair.  I was concerned since each transfer means a risk of falling.  It was SO much work and I was so worried she'd fall or that I'd drop her.  She tried to pull herself up to stand at the sink but could not. She ended up falling back onto the toilet and sitting there for a few minutes.   After getting her re-routed from toilet to walker to wheelchair she said, I guess you prooved your point, I can't use the bathroom.  She was calm, not too upset but just matter of fact. I didn't say I told you so, I just said, .."yup.  I wish it was different but your safety is our priority."

When it was time to go, I told her we'd have to deliver some supper to a nephew, look at his new house and then take her "back". I feared she'd become upset but she didn't. She was just fine and willing to go. It was a huge relief for us all.   This evening, a day later, she asked again, "How long do I have to be here?  Do I have to spend the rest of my life here?"  I applied the safety mantra again then changed the subject.  I have a feeling that I'll be using it weekly from here on. 
Mom says she wants to go home all the time, she makes me crzy nuts.   I am so sick of hearing Mom demand to go home.

Let go - realize what you CAN do versus what you WANT

The past year I've learned a lot of hard lessons, the most important is that I can't do everything - I must let some things go.   I can't keep up our home & yard in another state, a full-time job, Mom's house & yard, take mom for outings and doctor appointments, mind her finances AND exercise and eat right.    Something is always getting dropped, most often it's something I want for myself - a lunch with the girls, a hobby or craft, a trip to the salon for a haircut....   I am not complaining, but I am confessing that I've become okay with letting some things go for my own sake and my mom's.   I had to prioritize:  People have become important and my relationship with my husband has become the most important thing.   He's been wonderful and patient and I don't know how I'd do this all without him.  

After the past year here are my new priorities:

• 1st:   my husband and my own emotional needs 
• 2nd our financial well being - don't go into debt for others not even Mom, be thrifty & don't sacrifice your ability to save for your own long term care, pay our bills on time
• 2nd Mom's physical needs, is her environment safe? is it clean, clothes cleaned & replaced often, does she get meds on time and in a manner that she's happy with ( she needs to take pills with milk or she gets nauseous)
• 3rd Mom's emotional needs (does she feel loved and get enough mental stimulation?)
• 4th Mom's finances
• Maintaining our relationship with friends and family, keep in contact somehow, forget those who are demanding, fail to understand that you can't do everything
• Our home and yard
• Mom's home and yard

This list has served me well.  I've learned that a few weeds here and there aren't the end of the world, that the roses look just as good without constant deadheading.   I've also learned that it's okay if Mom doesn't have visitors every day, that she WILL survive a brief check up at the doctor on her own and that she will get enough to eat with out my prodding.   She has not changed, my attitude is what's changed.  I've learned to give up some control and stop worrying about what others think of me or of the condition of our home or of her little house and yard.   It's not possible to do it all without killing myself and Mom would not want that.  She'd want me to spend more time visiting with her or taking her out and less time breaking my back. 

Don't expect to control absolutely EVERYTHING...

Control; it's a very simple two syllable word. However, for me it also raises some complex situations these days. I want control. My mom doesn't want to give up control. I can't control doctors or aides. I need control to safe guard her finances, her health, her physical safety, her emotional well being and to very simply get things done in a timely fashion. Going through this with Mom has helped me to apply the old prayer: Lord grant me the strength to change the things I can, the patience to live with the things I cannot and the wisdom to know the difference. The wisdom is truly the hardest of all.

I've learned to wisely "position things", to "discuss", to finagle, to... well, maniupulate Mom and others to get things done. I don't like to use the word "manipulate" but that's what all of this positioning, discussing and finagling means - I must use my best manipulative behaviors and it's hard for me to do. Normally, I hate manipulators and I'm vulnerable to such people. I feel like a hypocrit but in this case I must feel okay with it. Sometimes it is wise to manipulate if it's for an unselfish and positive outcome. I use these skills so that Mom feels in control of the decisions concerning her life. I try to ensure that she feels heard; that she has some input over what happens - that it's HER decision or preference.

It's wise to understand when I CANNOT control something. I can't control the doctor's schedule, the type of toilet paper the ALF uses; how the ALF does laundry' whether my brothers visit or not. I can only control what I do in these instances. I am forced to ask myself whether I can do something about such situations. If I can do something, I will. If I cannot , then I wisely, give myself permission not to act, not to try and control. if Mom makes comments or asks for something I can't do anything about I try to talk it over with her and let her know I empathize. I ask what she thinks; what she wants and try to work on those if possible. Giving myself permission not to act, not to have control is really freeing and much less stressful.

I realized discussing control here in my blog was important after having lunch with a friend last week. Her elderly and frail in-laws just moved from their home to an apartment near her family. The intent of the move was completely honorable and she and her husband are doing all they can for his parents - more than many people might do. But, my friend must realize - for her own sanity - that she can't control absolutely everything. My friend complained that she sent a list of requests to the doctor with her mother in law. The list included many details, requests for tests and information; when the elderly in-laws came home, only 2/3 of the list was completed. My friend was upset. "Now I'll have to spend hours on the phone making these requests and pusing to getting it all done." The things left undone where basics like cholesterol checks, fecal smears for colon cancer and drug interactions. I thought - 2/3 of it was DONE?! Wow, I'd be happy with that!

She was so upset that I didn't dare say anything at this point but did try to take the heat off her in-laws by pointing out that the doctor might not be able to do the tests due to insurance restrictions. In this case, she wanted a whole lot of control. She wanted to know all of this information and wanted it all done by the new physician as a baseline for their care. It's an honorable intent but not necessarily possible. In a day or so, I'll send a card and write the poem about change and mention a word or two about control. I hope she'll get my message that we can't control everything all the time and to try that will only make YOU feel worse. If you're trying to control too much or too many people, think about whether you CAN do something that will have a positive outcome. If not, let it go. Your parent needs you to be positive and healthy as much as your spouse, your own kids and as much you do for yourself.

My 3am worry sessions...

So here I am, again, 3am, wide awake, worrying and feeling frustrated. To stave off the inevitable heart burn that comes with these episodes, I'm sitting up on the couch in the dark listening to NPR on my laptop. This has become a weekly ritual for me over the past two years. It's not a pity party, I'm not feeling sorry for myself. When this happens my mind races with issues about Mom - or other things but mostly Mom or her business affairs - and I just can't sleep. I often wonder if it's my subconscious trying to solve problems that I don't have time for during my waking hours.

There are so many things distract me from helping my Mom - or put it correctly - I don't have time to do all the things I want to do for my Mom. Today, I'm thinking of things that aren't vital to her physical well being but are vital to her emotional well being: can she easily get to the sink to sit and brush her teeth daily? Is she getting help to her weekly hair appointments? What about a permanent before the holidays, a new phone with volume control, getting out of her room for a 2pm coffee date with a new acquaintance, getting to resident meetings to stimulate her.... and on and on.

I believe that the emotional aspect of her situation - her whole life really - is equally important and most often overlooked in cases like hers. The staff at her ALF just don't have the time to work with her individually, it's no different from me. I don't have the time either and I feel terrible guilt because I don't. It would be a full time job, like being a stay at home mom with a toddler; I'd be a stay at home daughter.

When it comes to our parents I believe that most of us are all still narcissist kids and we just can't wrap our heads around the change in our roles. I don't mean narcissist in the most self-centered negative sense. I mean that we are looking out for our selves; trying to keep our own heads above water with jobs, kids, our own households to tend. There's just so much to do that we tend not to see how much help our parents really need. Once you're able to do that the role reversal from child to parent-of-parent seems complete. After decades of expecting them to consider our emotional state and help teach us how to handle our own needs, we have to put that training to work and turn the tables to help them. We have to turn our attention away from ourselves (and our kids if we'd had them) to our parents.

At this moment, I feel better. This blog is a quick distraction but Mom's needs remain so for now I'll do what I can at 3am. I'll search the internet for a new phone, I'll email my sistern in law about getting Mom to a hair appointment. I'll add some things to my to do list and keep plugging away. It's what my Mom would do if she were awake at 3am and worried about her own mother.

Stressed, yes but others are in more dire need...

Good developments and a frustrating conversation sum up the past few days. After my last conversation with Mom I had to take a break and have not called her for 3 days now. It's hard but I keep myself busy with household chores to make the time go by faster. For a couple of days when I called she had company; it was a relief to play second fiddle! She had someone to talk with other than me; the more the better. I can always call back. When I did call back, we had a frustrating conversation. She kept bringing up reasons why she HAD to move back home. There was no reasoning with her so I finally just got in a few "uh-hu"s then told her that I had to run and we'd discuss it on my next trip in May.

Other things have me stressed out as well - Dan wants to move to Florida for the dead of winter where I fear my storm-related migraines will become more frequent. My sister-in-law has offered to take Mom to the bank and I fear she'll hit Mom up for money and I am having NO luck in my own job search. I need to make the time to meditate and exercise so I can understand which of these I can impact and how I can protect Mom and do what's best for me at the same time. Whew!..deep breath... Things could be far worse. I've been in touch with a classmate who has far greater worries than my own. He's a single father of 4, two high school age boys and two younger kids with special needs. His ex-wife is not in the picture and he was diagnosed with cancer before the end of 2008. His worries are simple: he wants to survive for his kids. Money, possessions, location, none of it matters; he just wants to be here. I will pray for his health, wish him the best and be thankful that I'm capable of worrying about others right now because that means I'm doing alright.