A Strange Existence
This is just a reflection and a rave on life in this difficult zone. My day consists of wondering what can i do to occupy DH’s day. I have lots of interests and projects but most have been put on the backburner to accommodate my darling DH. Even DH now asks what day is it and what are we doing today. For the last few years it has been easy to hop into the car and go out, the beach with our puppy, fish & chips at The Strand, a picnic in the park, a movie or the theatre during the day, the dog park in the afternoon but life has taken another downward turn and getting into the car is becoming increasingly difficult, DH tires very quickly and can no longer walk very far, so I find my self challenged with time and love keeping him content and occupied.
Slowly walking around the hardware store wondering what to do next, a drive through MacDonald’s for a milkshake then timing it just right so that when we get home he will sleep and I will get some time to rest myself. I find I’m micromanaging time, I micromanage the groceries on line so that we don’t have to call in to a supermarket. I know exactly how much milk, bread, butter, and eggs we will use each week. When to make sure my teabags are reordered and sugar so I don’t run out. I am micromanaging doctors visits, blood tests, scans coupled with dog park visits making sure our Schnoodle gets his fare share of exercise and sociability which is another form of socialising for me too. I micromanage phone calls with friends because it now upsets my DH if I am on the phone too much and of course we all know how much work we do on the phone, appointments, banking, groceries and essential clothing.
It seems others are worried about the Middle East about the new virus outbreak and about the economy my main concern is keeping my DH content and happy. I feel like I am living in my own silent bubble a world away from reality and yet this is my reality.
Comments
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I'm in the same boat. ((HUGS))
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Hello Biggles, It sound like you've broken the code to survival as a care giver! At least it was for me. Having completed through stage 8 of this trial I can say that I found being hyper organized was my key. Anticipating the next step for my DW preparing emotionally and in practical terms. Kept me both busy for myself and supportive for her. It's a very challenging road! Her bedtime was always my time to relax a little and prepare for the next day. I wish you continued success! Rick
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I am right there with you Biggles. Organizing and planning for the day and it's 3am; egads what a reality I have going on here. But that is what it takes for me to keep my sanity. Side Note: News was stressing DW out so I decided to take a 1 year break from ALL news. It was a little difficult at first but I have been pleasantly surprised at how little the world news needs from me right now and its okay if I am not up on the Ebola virus; right now I am working on my Phd in dementia care giving. 🤣
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I am in the boat as you with my DW. My dilemma is I am taking on a roll of all that organizing which my DW wife had always done, planning meals is certainly not my strong suit, but I am learning. So much for the golden years!!
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Organizing has never been my strong suit, but I now find a need to try to control the chaos. I think it comes down to the point of exhaustion, not being able to handle as many things as I used to and a desperate need to avoid additional problems…the other day I turned on the bedroom light and the bulb went out…it almost sent me over the edge, because I suddenly had to stop what I was doing, find a new bulb, drag out a ladder and fix it before it became the source of a meltdown. Ugh…what a life we live!
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Thank you I love this 👌
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Ah yes but what hidden talents and strengths we find we have 💡great!
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I did that for a few years. Eventually I had to stay home most of the time but could sneak out in the morning for a walk before DH woke up. A few months ago his condition deteriorated to the point where I could no longer care for him. The first thing I did when he went to transitional care for a few weeks was to paint the dining room ceiling and then a slept a lot. I miss him more than I ever thought I could and visit him every day. I am leading a "me" centered life until later in the year when I will start making decisions about what is next for me. We have been married for 46 years and I have never lived alone. It is an adventure.
For years we were both invisible. It is like I disappeared as I spent my days providing care and gave up everything else. Now there is help for him.
By next year I won't have any of that money we saved up for retirement which is why I'll need to have a plan. Alzhiemer's if a horrible diseases. It robbed me or my spouse, and so much more as I watched both of my parents die.
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I'm doing the same. The funny thing is that until I read your post ( Biggles) I hadn't realized that that was exactly what I did for our children when they were young. I made sure that they ate before they knew they were hungry and in bed before they got overly tired, toilet before accidents, appt around their schedules and so. With DH I try to prepare for the next Stage of ALZ before it hits. Caretaking becomes an act of surrendering self for the benefit of another out of love. If no love is present, I don't know how a person could do it.
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I so feel your pain. I sometimes wonder how I raised little ones, because that's what I feel like I'm doing now and I'm exhausted all the time. Trying to keep him "amused" takes so much of my time and finding something he enjoys isn't easy.
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Such a strange existence.
I gained one thing from being a caregiver….the news of the world does not rile me up anymore. We'll see if I'll pay attention more in the coming years, but none of that stuff matters to me now.
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You must be reading my mind Biggles. I had planned to post ‘a day in the life’. I’ll just do it here. Wake up maybe 6 or 7ish in the morning. Sometimes earlier sometimes later. She stirs around later. Maybe I get out of bed and come back. When she’s ready we get out of bed. Do breakfast. Hopefully she stays calm enough that I don’t have to chase her around to eat. Maybe put clothes on her or make it a night gown day. Get her meds in her (probably around 9 or 9:30). Take her for a walk. Then a little later take her for a ride and let the meds take effect. Get her home and lie down around 11ish. Hopefully she sleeps for an hour or more. My helper comes at 1. I usually work in the yard or run some errands. In the meantime DW is just constantly milling around the house. Sometimes very busy. Sometimes less. Try to feed her as the day goes on. 5ish the helper leaves. Start the med regimen. Maybe do a milkshake run to chick filet. Hopefully by 6 or 6:30 we’re on the bed, lights low, blinds closed, watching news. Most times no sound. Waiting for her to drift off then wake a bit to use the bathroom (usually she goes just in the morning and night). Last pill for sleep around 7:30. She’s usually out by 8. Take the rest of the night for myself working a puzzle or watching tv on my phone with AirPods lying next to her. Next day, rinse and repeat.
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I totally agree with you. I’ve got bigger challenges here at home to even worry about what’s going on in the world.
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WOW!
Well I'm certainly not alone in this battle. God bless us all.
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Your description of the 'silent bubble' is so spot on and it resonates deeply. It is a strange, bittersweet reality where the rest of the world is stressing over global news, and your entire universe is narrowed down to the timing of a McDonald's milkshake, online groceries, and making sure you don't run out of teabags.
The amount of love, energy, and micromanagement you put into keeping your darling DH content, while also making sure your Schnoodle gets his exercise, is nothing short of heroic. But it is also incredibly isolating. It makes total sense that you feel a world away from reality, because your reality takes 100% of your focus just to keep things afloat.
Thank you for sharing this reflection. It's a gentle reminder to everyone else in this bubble that they aren't the only ones counting the eggs and timing the naps. I hope you got that moment of rest today while he slept. You are doing a beautiful job, but please remember your bubble has room for you to take care of yourself, too 🤗
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Thankyou Mary that’s beautifully written.
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Interesting CindyBum how our priorities and the importance of things change. I too have found this. The material things that were once so revered, the sales we had to get to first, that new car we so wanted and the eternity ring to show off, none of these things have any relevance or importance. It is only each other.
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Thank you persevere for sharing your day. It is quite comforting to hear of someone else’s routine the same but different. It really is a case of ‘eat, sleep, poop and repeat’ it is a strange, trying, has some good moments but generally sad existence. The kindness and care that comes through this site is priceless.
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Thank you for your care
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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