I am debating when it is safe to leave my wife home alone. I do leave for 30 -60 minuets at a time now and always when she is having a good span of time. Her neurosurgeon said just because her memory Is bad that is not unsafe. I still feel her behavior is not anywhere close to ok. A few days ago she was laying down in the bathtub. That is just one example of many odd behaviors. She has difficulty using the phone and i fear she could not call for help.
I’m sorry to say it like this but there really is no set ‘How Long?’ No 2 people’s journey through neurosurgery are ever the same. I’ve required a few neurosurgeries and none of them have been the same in recovery, so it can be really hard to give a definitive answer. I also think our gauge of ‘OK’ or ‘close to OK’ can be very subjective. My wife was certainly questioning somethings I was doing, but for me it was like I had to re-orientate myself to my ‘new normal’. Did you ask her about the ‘bathtub’ incident?
I have to agree with the neuro, memory and behaviour are often 2 differing brain functions. But in saying that, you too need to feel safe. Many, many years ago I used to teach and support people with disabilities the skills needed to live independently. Here’s what we would do: Start small. Can she use a mobile phone at all? If she can, see if you can get her to call you at a set time. If she can’t remember time, can she remember to call if the phone alarm is set? If she can’t remember the number, preset it onto the phone as a redial ie one button recall. Initially, I had problems with remembering steps, let’s say there was 5 steps to a task. I might step 1, 2 and 3 but then forget 4 and 5. I made up a task sheet with common tasks and their steps. As things improved and became routine, I got better at remembering the steps of the tasks.
A bonus with teaching or reorientating her phone use first, is that it can give you both a bit of security that firstly if needed you are contactable but also give her the confidence to attempt tasks on her own.
This recovery thing takes time and nobody can say just how much time. Some skills may return almost unaffected, but other skills may never return. Practice, patience (and lots of it) and persistence are going to be key.
Merl from the Modsupport Team
I did ask her about why she was the bathtub she said she wanted to lay down. Her memory is really bad. We will go over the steps for making a phone call and she sometimes can and other times she can’t. I do have my number programed in her cell and our land line. I also bought a phone that you can have pictures on the programed numbers.
I have made task sheets but they only help if she can remember they are there and will read them.
One of my biggest fears is her cooking, using the gas stove she put
a non oven safe tray in the oven while she was up for 2 hours in the middle of the night 2 nights ago. I guess i will just have to turn off the gas . there is no reasoning with her at times
I know it sounds like i am always complaining. I do realize that it is a gift that she is still here with me. I want the best for her and i know she has to work out things herself with practice. I know she get as frustrated with me as i can with her. She still asks me questions that make me fear for her safety. Just yesterday she asked me if we should stop for food for my roommate. We have not had anybody else live with us in over 30 years.
No, not at all. There aren’t many people who go through all of this knowing what’s coming, knowing how to manage around it all and if you need information who better to come speak to than people who have lived it themselves. When my brain decided to make life difficult I had no reference. I had no one to ask except dr’s. They could give me the ‘medical’ info, but outside of that they weren’t much help. The dr’s view was ‘All Fixed’, but this is all far from fixed IMO.
You need an outlet too and we understand that.
So please don’t be apologising for asking questions nor for offloading, that’s what we’re here for.
Merl from the Modsupport Team
Can I just say, it doesn’t sound like a complaint to me. It sounds like you’re trying your best to look after her in every way. That’s really quite hard and people round here will recognise how hard that is.
Regards the gas, in the UK you can get a lockable gas valve for the hob from the local gas distribution company fitted free of charge. It may be worth finding out from your gas supply company whether such things are available. And tell her that using the hob isn’t her job for a while.
I don’t think there is a one size fits all answer to this question. You may think about installing various protection tools similar to when an older adult has dementia. Maybe a security camera, a life line alert, security alarms. It may or may not be a permanent need as your wife may continue to heal and improve. God bless and good luck.
I don’t read complaining, I read fear and an abundance of love. I asked BH and was told the terror BH felt went on for two years after my rupture and then panic for five more. Just the other day, I was in the shower, BH couldn’t find me and freaked, literally! BH didn’t hear the water running and went to neighbors, began texting other neighbors and searched our yard. It’s November and we believe BH got the PTSD and not me from my rupture.
I think your posts are a great reminder what caregivers go through. Check to see if your gas oven has a safety lock feature. You may need to get locks for the range part as well. I think the different dementia/Alzheimer’s sites may have suggestions on which to use.
As much as you love your wife, you cannot be 24 hours with her so stop feeling guilty when you are trying to resume your life’s endeavors.
God only knows your love and dedication towards your wife will always be there.
You need to continue to be strong for both of you. You are doing your best and that’s all you can do. Unfortunately there will be times when things will happen and as much as you want to be there…you won’t! In those times, your faithful love for her will help both you to get up again and move forward.
Have you tried setting cameras inside your home to see her while you are away from home? Perhaps that could give you more peace.
Like the bath tub issue, you can try using safety gadgets when she’s not in the need of using the bath tub secure somewhat perhaps the facets to be locked.
This is my best opinion. Best of luck.
Thank all of you for your feedback.
I have installed cameras of course there are blind spots. The gas can be turned off by a valve in the basement that is just for the stove. I plan on getting a small dog house with a heated pad in case she forgets and leaves our very small dog outside as our winters can be very cold at times.
I’m not concerned about any water issues with the bathtub that was just ment as an example of what i perceive to be her confusion issues and odd behavior and how that will play a roll in her safety.
We do practice with making making phone calls and i have programmed numbers into the phones. it seems to be better with things that have been around for awhile any new skill is difficult. I have considered a “i have fallen and i can’t get up” kind of thing but i can’t say she will keep it on or remember what its for, or press it often as she did with the 911 programmed phone number.
Having a wee bit of a pup up in Michigan would be another big concern for you, besides the dog house, have you considered a heated water bowl? I just looked on Amazon and if your small dog is small enough for a cat house there’s a multi cat with heated pad that’s 47% off. We had a dog house that came with our Boxer decades ago, the door was offset and it was great as the dog and I could get inside and escape the wind.
It’s really good to read you can turn off the gas for the oven when you leave the house. At the house we live in now, I left the tea kettle on and forgot about it. I now have a tea kettle with an auto shut off feature. This was about five years after I ruptured.
You may have to start leaving her for longer periods of time at about 15-30 minute increments each day. When BH went back to work, I think I got calls every hour just to check on me.
Also, have you joined Ben’s Friends Caregiver Support Group yet? You can find it here https://forum.caregiversupportcommunity.org/. It’s a fairly new group maybe a year old or a bit over. I know BH is a member but I don’t know how busy it is. I’m just trying to think of more ways to help you, but we are always here for you!
I did not know about the caregiver support group thank you.
I think our dog will fit into a cat house and was looking at that exact double one but will have to get out the measuring tape to be sure. I do have cameras on the outside also so i hope i would know the dog is outside and sent for help from the neighbor or call home or worse case get home within the hour.