A Good Day, When? Not in a Long Time
First part 2019-Second 2023
I am putting this here because it seems many will be able to relate and know they are not alone concerning physical limitations due to disability and added challenges later.
Haven’t had a good or even an ok day in over six years. I can say the same for my dear husband, who is with me almost all the time. There's weariness, fatigue, frustration, and pain or discomfort most of the time. Certainly not suicidal, but would not mind going home when the time comes.
This is from pain, limitations in mobility, reduced independence, and fewer activities (more limitations than I had already due to my disability, cerebral palsy affecting legs. When someone already has a physical disability, any additional mishap or complication affects us more than an able bodied person, for what should be obvious reasons. I used to be more independent and self sufficient, able to live on my own for years.
These added things started after a broken ankle in 2013 (despite surgery, long inpatient and outpatient therapy, and built up shoe). There's abdominal pain, digestive complications, food intolerances, and more. This also disrupts sleep, so there's never enough sleep. Almost all the time I feel physically terrible to varying degrees. There are no good answers so far, and not for lack of trying.
All this contributes to worry, stress, some isolation, fewer possibilities for enjoyable activities, like outings, travel. Getting out and about at all is a challenge too. There are changes in relationships with family and friends, in addition to what can happen anytime to anyone (distance, time, changes in people, less in common).
Every aspect of life is changed and much more challenging. Be careful. Don’t fall. I didn’t plan to write this down or even sort it out like this. Not crying, just the facts. I may not look as bad as I usually feel. I may not look like I am so limited. From my circle of family and friends, I'm not expecting answers, advice, or sympathy, just a bit of understanding of what this is like.
I have the simultaneous conflicting wish to connect and to be left to some quiet time. People tend to ask almost every time we talk, how the ankle is. I know they mean well, but my goodness. Well, same as it's been all this time, healed but not great and one leg still shorter. It isn't going to change. So there I am explaining yet again, that's how that is and that is right now by no means the biggest physical cause of distress and limitation. I am always explain nicely.
My husband is a worrier and can be dramatic, making things stranger sometimes. Even routine daily matters seem a big deal (whether it is big or small it is the same to him), and he often expects the worst, only later to realize it was't so bad after all.
I haven't done as much around the house as I used to do, and he does more now.
He often laments that there is too much to do. Yet, at the same time, I may start to do something that I can or probably can do and he jumps in and says let me do that. It seems to me that most of what he does, he does for both of us, and there would be near the same amount to do if he was alone. He doesn't seem to think so, and says way more than half is for me. This seems quite an exaggeration to me. I do my best not to create more work.
My worry comes mostly from this: My husband and I are both the same age, older and retired. If something additional happens to either one of us, we could not manage on our own in this home. He might be able to, but not me. I have hoped that my time will come before his for this reason. We have not been able to come up with a plan future living arrangements. I would like to figure things out now, before there is some additional problem or crisis. I need a little personal help. The house and yard is too much for him to care for. I would like to explore independent living options where you have your own place, but don't need to worry about maintenance, cleaning, cooking, and maybe transportation. I am the one who doesn't want to put this off too long. He thinks it's fine for now and we can wait. Also, we can’t forget the current state of our society and of the planet that affects us all.
It is now March 2023. The above portion was written sometime in 2019 and before Covid. In October of 2021 I had a setback after a medical test. This resulted in more medical challenges and significantly more reduced mobility, resulting in more loss of independence. I was in and out of the hospital and rehab and have not improved to my previous level.
My husband and I moved to Florida and into an assisted living facility last May. I have two siblings here and we didn't have many strong ties in Arizona anymore. The two of them researched several places here and helped us move. We are both having more physical difficulties so things are often quite difficult.. Still no real answers or improvement of my previously explained conditions. I have had some appointments and more coming up, but not soon enough. Several specialty therapy appointments were recently cancelled for 3 weeks due to a flood in the office. They are needed before another doctor can do any procedures he is considering that may help. Another one I need is booked up till June.
Hubby has been helping me with what I need for the most part, but it is hard for both of us. He can only do so much because he needs hernia repair and we are not getting much help here, despite the fact that it is considered assisted living.
We had part time home care helpers before moving here. However, that was quite expensive and it made more financial sense to opt for an assisted living facility.
There are things that are unknowable about such facilities until you actually move in, no matter how good it may appear at first. There is a staffing shortage. The apartments are quite small, and smaller than we thought after getting in. They charge too much for what you get in space and in care, in our opinion. We are disappointed for a few other reasons too, but now we feel we have not much of a choice. We sold our home and got less for it than expected, due to bad advice from our first realtor. It took several months to sell. So here we are.
Everything is now more difficult for us to do not all that long ago. Everything is a giant project and takes forever. Medicare does not cover it. We have money from the house sale, but who knows how long it will last and how long we will last. We feel we have almost no control over our life now. It is my hope that someone will learn and be helped by our experience.