Sunday, April 12, 2015
Searching for a one story house has proven to be fun, frustrating, disappointing, exciting, exhilarating and exhausting.
It has also proved to be quite enlightening.
As a caregiver, I tend to see caregiving and caregiving issues everywhere. Kind of like when a person buys a red sports car and all of a sudden red sports cars are everywhere!
My house search has been a little like that. Only, instead of seeing (and driving) a little red sports car, I am driving my grey VW Jetta from house to house to house with Robert tucked in the backseat with his puzzle book, a bottle of water and a chocolate shake. Richard is the navigator and we either follow our realtor around looking at houses or visit open houses, snagging a cookie or more bottled water as we go.
After what feels like years of searching for a house, I think I have become somewhat of an expert on the house search. (Not yet an expert on buying since we’ve yet to land a deal but that’s beside the point.)
What has struck me the most is the amount of people in the market searching for a house without stairs or with enough room for a relative that now needs care. I have run into a friend searching for a larger house so they could accommodate her husband’s mom. They were moving her in because of her declining health.
At another open house, I overheard one couple lamenting how the house description said “one story” yet there were steps everywhere! There was one step into the living room. Three steps to get to the bedrooms. Several steps down a deck to get to the backyard. Try maneuvering around that house with a walker or wheelchair!
My favorite question to ask about a house is why the owner is selling. Many times the answer relates to caregiving: The owner is selling to move to another city to care for her mom. The owner’s wife died after he spent years caring for her (and remodeling their home to accommodate her wheelchair) and he no longer needs such a large house.
Our own reason for selling our beloved two story house is so Robert can have his own bedroom and Richard doesn’t have to limit his trips up and down the stairs to reduce his back pain. It’s heartbreaking to see Richard climbing the stairs in obvious pain after a long day and nearly impossible to get him upstairs after a surgery or back-related procedure.
In our small universe I can see how housing needs have changed as people get older or take on caregiving duties or become disabled. When we first bought our house we were excited to expand our living space from a three bedroom apartment to a house where all three kids had their own rooms with plenty of other space for all the dogs, cats, hamsters and turtles who made their way into our hearts. Our house with the generous backyard and two large living spaces was perfect while the kids grew up (although having to share one bathroom during the teen years was, let’s say, a character building experience for them).
There are all kinds of reasons people buy and sell houses but I can see how caregiving duties influence the market perhaps as much as growing families do.
It surprises me when I don’t see many available one story homes or when I see a two story with one bedroom and bathroom downstairs – and the laundry room upstairs! I suppose that would be helpful with the majority of family residing upstairs but it would be a nightmare for this caregiver who must hold the world-record for Most Loads of Laundry Washed in One Day (or is at least tied with every other caregiver out there).
My heart skips a beat when I see a house listed with “two master bedrooms.” What a treat that would be! I have seen housing developments offer houses with a mother-in-law suite but not near enough from what I can tell. It makes me wonder if there are any developers who are also caregivers.
I am not self-centered enough to think all housing should match my criteria (a reasonably priced one-story house with a large enough yard for all those animals we still have, in case you're selling). However, it would be nice if there were more one story houses available in the market so there wouldn’t be such a buying frenzy and bidding war with the ones that are available. Maybe other caregivers are holding onto those like the gold they are!
I am confident we will eventually find our house and settle into it, turning it into our “castle” in no time (to quote my friend Denise Brown of CareGiving.com).
But then I am holding on to it and appreciating it for the treasure it is for a very long time!
Thursday, April 9, 2015
How do you define success?
I thought it was about winning – getting what I wanted. Achieving the sought-after goal! Anything less meant there was a problem: my effort wasn’t good enough.
|The perfect piece of art for the perfect house -|
wherever that may be
I wasn’t good enough.
Of course I believe in trying your hardest and teaching my kids that winning isn’t everything.
“What counts is trying your best, not whether you win or lose!”
I believe that but if I “lose” I still feel that disappointment in the pit of my stomach. I replay the situation over and over in my head to see if there was something I could have done differently to alter the outcome.
I wonder if I really did leave it all on the table, exhausting all efforts, questioning, replaying, regretting.
Finally I have come to the realization that it really isn’t about getting what I want or achieving the goal but what I have done to get there. (Yeah, I know, you would think I could have learned this years ago but I can be a little hard-headed.)
It’s silly how I got to this realization, really, but I see success very differently now.
We are in the midst of selling our two-story house in order to move to a one-story. Robert gets his own room, Richard doesn’t have increased back pain due to the stairs and I get less exercise.
The sale of our house has one more hurdle: the appraisal. We have a buyer but don’t want the deal to fall through with a low appraisal and have to start over. This offer is allowing us a “rent back” which means we don’t have to move twice. A huge benefit and I am beyond grateful. We don’t want to rent our own house forever so we are on the search for a new one.
We found one we fell in love with and all signs pointed to it being OUR house. We visited it three times not to convince ourselves of its perfection but to spend time in the house. To pick out Robert’s room and our offices and to relish the extra half bath (joy!) and sit in the living room.
Our living room.
Richard and I visually placed all of our furniture and artwork throughout this lovely home. A piece of art that Richard won while on a cruise had the colors of the house in it. It was perfect for the front entry.
We placed an offer on the house, knowing our own house was still in the contingency period but it was a strong offer. Our agent made it clear we were within days of clearing all contingencies.
There is absolutely nothing more we could have done to get this house.
The same day we were waiting for our offer to be reviewed our house was being appraised.
(The Universe has a sick sense of humor.)
We did everything possible to make our house look its best. I know a clean house and freshly cut grass shouldn’t translate into extra dollars but appraisers are human too. First impressions do make a difference.
After the appraisal and while we waited to hear about the offer I realized that everything was now out of our hands. We had done everything we possibly could to get the dream house and to get the highest appraisal possible. Everything. Even I couldn’t think of one more thing that we could have done.
I realized that no matter the outcome, I could feel good about our efforts and could call this a success. Even if we didn’t get the house or get as much for our house.
We had left everything on the table.
When we got the news today that we did not get the house we wanted I did not feel regret. Not one bit. It was disappointing, for sure, but I knew we did our best and knew that our best was good enough.
For a reason not yet known to us, that house was not meant to be ours. As much as everything seemed perfect, there is something else out there for us. (We are still waiting on the appraisal.)
Of this I am sure: our best efforts were good enough.
This is a lesson I have been trying to learn while caregiving because the feeling of my efforts not being good enough have a way of eating at me. Mom died – was there some treatment we could have found to cure her? Dad died – should we have tried dialysis even after he expressly stated “no dialysis”? I grappled with these thoughts after each one died and finally put those thoughts to rest.
With caregiving, it is difficult to define winning. There isn’t really a “winning” outcome with caregiving. Regret and guilt are often part of the caregiving experience.
I wondered if I would question myself once Robert’s time came. I don’t want to, I don’t want any regrets. How could I declare my caring for him a win if he dies? I want to say I left everything on the table.
Finally, I made the connection. There is nothing to win in caregiving. It is all about effort. It is about leaving it all on the table.
We did everything possible to get that lovely house and we have done everything possible to keep Robert healthy, happy and, yes, even excellent.
That is how I define success.
How do you define success?
Tuesday, March 24, 2015
In the March interview with Denise Brown of CareGiving.com, we talked about the stress of a working caregiver. I realized during our conversation there is a baseline of normal for my stress level and then there is a line that when I cross it, know I am under too much stress.
I feel it from my toes to the top of my head. I am tense and focused on plowing through the situation. My lips are pursed, my eyes are squinty and I forget to eat, drink and go to the bathroom.
|Grumpy Cat - Always full of wisdom|
Stress builds up and is manageable until it isn’t. It can be one little thing that makes me cross that line (an unexpected work project; a deadline that has been moved up; a cluster of seizures Robert experiences or the question “why don’t you handle ‘insert project here’ this way?”).
I AM GOOD AT MY JOB SO LET ME DO IT!
There is a line and I know when I have crossed it.
I get cranky (see above) and need to indulge in self-care. What if there isn’t time for that? Then I postpone the self-care for a short-period of time (a day, a week) but I know that it will happen. For me, self-care is usually a manicure or pedicure (or if I am really indulgent, both). If my schedule is so packed that I cannot indulge in that block of time, I know that I have to do something to relax – maybe just watch a television show or have unproductive computer time (you know, watching cute cat or dog videos).
Where is your line? What do you do when you have crossed from the manageable stress level to the “I CAN’T TAKE IT ANYMORE!” level?
I invite you to share what pushes you over that line in the comment section below.
Also, please join us the second Saturday of each month to listen live so you can participate and ask questions or comment in the chatroom during the show. I look forward to the show with Denise and as we also discussed this month, the shows are a great collection of the ups and downs of caregiving – each month is a new episode.
Denise asked what I hope to talk about in April. I told her I hope to have the house sold and have us well on the way to moving into a one-story house. That is an episode I would like to end soon!
I think I might actually yell, “That’s a wrap!” when we sign on a new house – someone get me a megaphone!
Thank you for listening (and reading).
The March show can be heard here.
Saturday, March 21, 2015
The unexpected nature of seizures is scary enough. Will one strike while Robert is eating? When he is standing? When he is transferring from his walker to the wheelchair?
Robert’s seizures are the Complex Partial type. He loses awareness, his head turns to the right and generally, there is labored breathing.
They last from 2 seconds to 5 minutes. We can usually tell when he is going to have a longer one because his head turns more to the right than with the shorter ones. It’s as if his head is turned as far to the right as possible – sometimes the seizure starts with his head sort of to the right and then after a few seconds, his head turns all the way right.
When that happens, I know we’re in for a few minutes of labored breathing, lips pursed together and, sometimes, a fall (unless we prevent it). His whole body tries to turn right causing him to move out of his chair. Richard or I gently hold onto him or block him so he won’t fall off the toilet or chair or wherever he may be.
Those are awful. Robert is confused afterwards although it is interesting to hear him answer the questions we ask him. He has insisted I am not his sister, has thought Richard was his step-dad or brother and many times cannot tell us where he is living.
It must be very scary for Robert to be so confused. Richard and I gently remind him where he is and who we are and eventually the confusion subsides.
For months now, Robert has been having clusters of seizures within a short period of time. These usually come by the dozens and have proven to be quite challenging to stop.
The first cluster of dozens was in November just a few days before we left for Disneyland. The Nurse Practitioner (who I LOVE) thought the cluster was caused by all the excitement of the upcoming trip. That made sense.
Until two weeks later when another cluster struck.
Then one in December. One in February and two in March (so far).
The NP increased the dose of the emergency med when the clusters first started as another theory was Robert was getting used to the drug (Ativan) and it was losing its effectiveness. She told me the max amount to give him per day was 4 mg.
Twice I have had to give him more than the max.
Twice I worried that I was going to do more harm than good.
Yes, twice I have worried that I was going to kill him by giving him too much of the medication.
If I don’t give him the emergency med the seizures keep coming and I am afraid he will end up in Status Epilepticus.
I have taken him to the hospital during a cluster – the first time it happened. Going to the ER is always a risk, however, because declines happen at hospitals. It is best if I can manage the seizures at home.
So Richard and I do our best. We keep a log, time the seizures, give him the Ativan and keep the activity and noise to a minimum and let him rest.
(We also take him to the restroom a lot because the Ativan seems to activate his bladder like you wouldn’t believe!)
The logs have helped. I keep a seizure log, a behavior log and a vitals log. They help me try to find the seizure triggers and they help give me a sense of control over something I absolutely have none.
I realize the logs are an illusion of control but I use them and they are comforting.
They are actually very helpful, even if they don’t really give me the control I think they do. However, I have reviewed all the logs and have a theory: I think the trigger has to do with him being overly-tired. The clusters occur on the weekends (except one which happened on a Thursday). I think he is exhausted from waking up early through the week and going to Day Program.
The other correlation is they tend to occur when he is congested. He has had a really bad cough lately but his vitals are fine (no temp, pulse rate is normal and the oxygen level is normal as well). Maybe it’s a combination of the congestion and being overly tired.
In order to make sure he is well-rested, we let Robert sleep in on the weekends, we have changed his bedtime to an hour earlier and the weekday morning wake-up to an hour later. We have declined morning transportation to Day Program just so Robert isn’t rushed in the morning and we can let him sleep in later than we would be able to if he was supposed to catch the van to Program.
It still may not be enough rest for him.
Robert’s seizures are changing and getting scarier than they used to be but they will not deter me. We will continue to look for the right medication, the right amount of sleep, the right triggers so we can more effectively manage the seizures.
We have to – there is no other option.