You, sir, are in no way being weak or selfish. I have been a caregiver most of life; the desire to protect your family while caring for someone else is honorable. Few people do so.
I feel for you, I really do. We are approaching this with my grandmother. My husband and I are not her primary caretakers, she has a family friend who lives there and a nurse who comes in Monday - Friday, but we are all part of her care in general. We wanted her to stay in her home as long as possible because the very little bit of her memory remaining stays intact when she is in her home. When she is away from home it’s like everything has been stripped from her. We know the moment she has to go into a facility or assisted living we will lose what is left of her. But we’re getting to that moment very soon, her quality of life is deteriorating and it’s becoming unfair to the housemate who is helping care for her, as well.
The very thought makes me sick to my stomach and my heart aches, but we know when it happens it will be out of love, knowing we can no longer give her what she needs and also knowing her safety is a big issue.
The person you love died a long time ago, long before her heart actually stops beating. You are not doing anything that will cause her pain.
Amen. Many ALZ patients wander because they are trying to find a familiar place. Of course, this can lead to all kinds of dangers and injuries when they take off.
JFLuvly, did you make any calls or do any other kind of research today? I’m curious as to what you found out, and what you might be planning to do.
She left the house today and while I was looking for her I had a pretty bad panic attack that almost landed me in the hospital. My wife was gone to the movies with my daughter and niece and I was home with her and my son. What freaking mess I had myself in. I couldn’t leave my son alone, couldn’t stop looking for her and couldn’t go to the hospital. My neighbour down back came up to my place and told me that she was there sitting down and talking to her so I asked her if she could give me five minutes and I would come get her, she said ok. I got myself together as best I could and went and picked her up and headed to the hospital. I was in the parking lot when I realised that I could not leave them in the truck, nor could I take them with me (it can take hours to see a doctor at the er) so I just went home and sucked it up. When I got her in the house I sat in the truck and called Adult Protective Services. I got their answering service and they took my info and said someone would call me back. That was around 4:30 and I have not heard anything since then. I am sure they will call in the morning and hopefully I can get this sorted out.
I’m so sorry. You did the right thing, as hard as it is.
Thanks,I will update tomorrow when I find out what is going on.
What you’re doing is called “sandwiched care”, and it is one of the roughest times for a caregiver. I know because my wife takes care of me and 2 of her siblings. How she does it, I don’t know, but she started with our local Alzheimer’s Association, and now my counsellor comes to our house once a week for help and moral support.
One of the priorities of the new Alzheimer’s legislation is getting pay for caregivers.
I see from reading the whole thread you’re way past the stage where you can handle this on your own, however, so yes, please get her placement as soon as possible.
I can’t believe I’m writing this.
Q
You are right Quasi, there is no way I can do this any more. I am just adding way more stress than I can handle right now.
Did you hear anything?
So the lady from Adult Protective Services was just here for the last hour and a half. She first suggested a section seven,which apparently means that as soon as a bed is available (within the next two weeks) I would take her to the nursing home to be admitted. By the time she left she bumped it up to a section nine in which they would come and get her with an ambulance because she felt she would not go willingly. The whole thing was heartbreaking watching her try to act like nothing was wrong with her mind. She went as far as to say she would make us a cup of tea to show she could take care of herself. She took two dirty cups and put some hot water and some cold water in them and passed them to us. Then asked if we wanted some milk, which was just some more tap water in a cup. The APS lady felt there was no way she could be on her own and that we had done what we could. She was the same one that was here when I was taking care of my parents and knows what we have been going through, so that was a bit comforting.
So I guess that sometime in the next two weeks they will find a bed for her and that will be that. It’s been a rough go but the toll it’s taking on me and my family is just too much, so I guess it will be for the better.
It will be hard and heartbreaking to adjust to, but after a while you will see that it was the right decision all along.
That sounds like a very painful experience but I’m glad they did such a thorough observation and didn’t just breeze in and out. It helps you have confidence in their evaluation. Hang in there.
The APS called and had set up an appointment with her doctor this afternoon which I just got back from, apparently they needed some kind of confirmation from the doctor about her status for placement. Normally she won’t go to the doctor without a fight but this time she was glad to go. After she seen the doctor and we were driving home she was so full of life and talkative. We laughed and joked on the way home and now I am back where I started. I kept thinking that I was taking the easy way out and that she was not that bad. In reality I know that in a few hours she will be leaving the house and wandering around, that I won’t sleep tonight again worrying about her leaving or burning the house down and that nothing I do will stop her behaviour. It’s tough but I guess sometimes you have to make decisions that are less than favourable and live with them. I can’t help but think that if I did not have so much other crap on my plate right now that taking care of her would not be such a big deal, or maybe it would.
Thank you all for your input and understanding, it’s been a great help. Not having any other immediate family to discuss these issues with has been tough, but having you guys to vent to has made it easier to make some decisions. Now if only I could get you guys to come over to my place and solve all my other problems I would be good to go!
Thanks again.
You’re doing the right thing, JFLuvly. My fiance, his father and I cared for his mom for 8 years, and I hate to say it, but when she lost her ability to walk in the last two years -she’d had a stroke ages ago and had a very pronounced limp, and after a week’s hospital stay during which they didn’t make her get out of bed, that was it. It’s frightening how quickly someone can decline- in a lot of ways it made things easier and was the only reason we could take care of her at home. It was a hard job, and if she’d been fully mobile, even the three of us watching her would never have been enough. This is beyond the average person’s capability to deal with, and failing to get her more help would be a disservice to both her and yourselves.
Jenaroph
I know exactly what you mean. My mom also had dementia and in august of '05 she wandered away from her house on the hottest day we had that year. I looked everywhere for her for about an hour and then got the cops involved. I figured she was just walking around the neighbourhood and tried all the local places with no luck. I was a longtime member of our Search and Rescue outfit and reverted back to my training, I found her in the woods behind her home laying in the bushes beside a birch tree. She was severely dehydrated, full of bug bites and had laid in poison ivy. In October of that year she fell and broke her hip and that was when she stopped walking. In hindsight we realised that it was a blessing in disguise and in many ways made her care that much easier until we put her in a nursing home in '09, had she been mobile I have no idea how we would have dealt with her.
I think you’re doing the right thing, too. My husband’s grandfather was put into assisted living just this year - it is heartbreaking to hear him so confused about where he lives, and why they keep driving him back to the wrong place (that’s not my house! why are you leaving me here? that sort of thing), but he wasn’t looking after himself and taking his medications and stuff, and we were all worried that he would hurt himself, too, with leaving the stove on or something, and it sounds like he is finally settling in to his new home.
I don’t think there’s any good solution when your family members have to go into a home; all you can do is do the best for them and yourself (which isn’t necessarily what they want).
Sounds like things are working out for the best and you’re getting some very good help, JFLuvly. That’s great.
Best wishes
Q
I know that you know that isn’t what you’re doing, even when it feels like it. You are taking care of her by doing this. I lost a Great-Uncle because he wandered. He seemed not to be doing that badly. He had a younger wife to look after him and many relatives in the area to help out. He’d start to walk off, sometimes, but was easy to redirect. He still remembered who most of his relatives were.
It happened during a family visit, when several of his grown children were there. Everyone got to sleep okay, but in the morning he was gone. He was found later by the side of the road. Wandering is just not safe and is tragically difficult to deal with in a home situation, even when there are multiple people taking turns helping. No matter what it feels like, you’re doing what needs to be done to keep your Aunt safe.