This disease can stop her from being able to eat. From being able to walk, at any given time. She was falling and we didn’t know why. No one was discussing with us what frontal lobe dementia was. How devastating it can be. It pulled a disc out on me trying to lift her when she literally was dead weight. The FLD just shut her down from being able to help me. So she was in the hospital for 3 weeks. Not one time in the hospital did she fall. Not one time did she hurt herself. But we were scared of the “what if’s” if we took her home. So we signed her into a NH. The people at the front desk were all “helpful and concerned and made many many promises of how they can help Mom with stuff that we haven’t been able to get the state to help with “ but it’s been 2 days already, that she’s been there. And my mom needs oxygen 24/7. They knew this. Right off the bat, when they were transferring her from the hospital to the nursing home, they didn’t put her on oxygen. By the time she got to the facility, her fingers had began turning purple and blue. Finally they brought her an oxygen condensing machine. But they know they want her up walking everyday to keep up her strength. But now they are saying they don’t have portable oxygen tanks? Just the kind you have to drag with you. My thing is “how can she continue to practice with her walking with a walker, plus drag a smaller oxygen condenser? She can’t walk right. She’d fall even quicker. You heard the saying “if it feels bad in your gut instinct, then it probably is!!” My stomach has been uneasy for 4 days now. I’m trying to separate “feeling bad putting her in a NH because MAYBE I can see to her at home.” “Or am I just uneasy because these people aren’t doing anything they have promised to do for her independence already in just 2 days have passed? Help me someone who has knowledge of frontal lobe dementia.

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In a nursing homes, there are two very important people to know, the director of Nursing (DON) and the Director ofSocial Work. I found it most efficient to make all requests by email, to them.

Always remember when you make a request to note who you are making it to. If the request does not get complied with, ask "who can make this happen?"

For oxygen, there needs to be doctor's orders. For a portable tank, there may need to be a separate order. There may need to be a Medicare review for approval.

You will have a care meeting in a week or so with the don, Dr and mom's nurse and therapists. Make sure you have a list of your questions and concerns.
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I’m sorry. I don’t have an answer for you. It’s a quiet time on the forum. Someone will be along.
In reading your post once more it seems right that you would ask for help with your mom. You couldn’t care for her at home. You didn’t know about FLD until she was in the hospital I take it. So now the problem is the NH doesn’t have the proper equipment! For her to continue with what she was able to do in the hospital she needs a portable oxygen tank. Makes sense.
Do they tell you when she will get the tank or are they saying she won’t get it at all?
I don’t know about NHs but someone will surely know the right person for you to speak with. I know you are very concerned about your mom. Do you see others there with portable oxygen? Did you have a choice of NHs?
Sometimes it takes a few days to get the orders all processed correctly. I had that experience with my mom in a rehab. I know what you mean about a lot of promises and then it turns out different. I had to stay insistent with the nurse in charge the night we checked in. She seemed afraid to call for help. Like she was on her own with no resources. My mother was in pain. They didn’t have her meds. The meds will come at midnight she said. Midnight came and went. Finally I went home and got her something. Her back was fractured. My mom was not a complainer. If she said her back hurt. I knew it would be killing me. We feel so helpless because we know they are depending on us.
She needs a bedside commode I said. Oh we don’t have any on the floor. Where are they I said. Oh in the storage. Do you need me to go with you to get it I asked.
Oh no. We can ask Billy to get it she said. Well where is Billy? Oh, I’ll call him and see if he will go get it.
You would have thought I was asking them to do their job or something.
They wanted her to pee in her pants I finally figured out but she wasn’t about to do that. Not for a couple of more years.
The bedside commode appeared. It was an oddity it seemed. Everyone remarked when they saw it. Oh, I didn’t think we had anymore of those. I know the portable oxygen is a lot more important than the pills and the bedside commode but I also know how frustrating it can be to feel tricked. To have believed them when they made promises they couldnt keep. So, Mycat its tough when our moms get to these rough spots in life. We are reminded how fragile life is. I do hope you are getting some rest. Someone will know about portable oxygen and FLD. Keep coming back with your questions. Call the Area Agency on Aging for your county and see if they can help you find a portable oxygen tank. Meanwhile ask for therapy for your mom. Maybe the therapists have them. Hugs for you and mom.
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