This Isn't a Journey, It's Torture -- For Both of Us

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This Isn't a Journey, It's Torture -- For Both of Us

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Appointment made. Facility is best rated in the region. Will be meeting with admissions person and (hopefully) the social worker. Took a 1/2 personal day on Friday to make all this happen.

HOWEVER....

Today I get notified by the home care company that Mom is very weak, can't walk hardly at all and oh-by-the-way the caregivers are not allowed to lift anything more than 25 pounds. Okaaaay. So if she falls they can't pick her up. Okaaaay. They also say I had mentioned last week that it might be time to look into getting a wheelchair. Okaaay. BUT if I get a chair and you can't life more than 25 pounds how, pray tell, will you move her from her bed to the wheelchair and the wheelchair to her living room chair? Hmmmmm? No answer.

I ordered a chair, it'll be here Monday.

We already have a walker - can no longer use due to deterioration of her right hand and arm (not that she would ever use it anyway) - and a really nice gait belt with handles for more secure use for the caregiver.

Funny, I got her from her living room chair to the dining room table tonight, same as the last several nights. Yes, she's weak and I am supporting more of her weight but why the sudden concern?

So many other issues.

Isn't eating. Can't understand how to use a glass/cup to drink out of within a half our after dinner. Can't use a straw, hates the sippy cup.... so dehydration is a worry. Totally mute now. Can't read. Sometimes TV is too complex to follow but has to have it on all the time.

Yet, she knows most of what is going on around her. She is not distractable. It's also a good 20 minutes away this facility.

How am I supposed to move her? She's going to be so extremely upset, I'm all tied up in knots just thinking about it. I don't want to cause her any more anxiety than she already does. Her mother was discharged from hospital to facility -- had a feeding tube due to intestinal issues but there was nothing wrong with her mentally. Grammy pulled out the tube one night, disconnected herself from everything and made a break for it. She didn't make it and didn't survive. Mom may have dementia but she isn't going to go quietly about this. The duchess of guilt trips is NOT going to let this go well or even partly well. (Not the queen, that was Grammy)

I was almost -- not quite, not that I would admit to myself -- hoping when I called the doctor today that he would want to see her OR that she would have a controlled fall to the floor, the caregiver would call 911, she'd get admitted and then discharged to the facility. Take the decision out of my hands -- let me blame someone, ANYone for the move.

No such luck.  Of course. He's prescribing an appetite enhancer for her.

In other news, I had booked a 1/2 hour massage for Saturday. Just a 1/2 hour. Figured it would be no trouble to get one of my two (!) friends to sit with her for an hour-ish.

Of course not.

One is - suddenly mind you - going out of town and the other - also suddenly - is avoiding my texts and phone calls. So I have to cancel and hopefully reschedule. They need 48 hours notice or I lose my money - so can't wait, have to call tomorrow. Have to cancel a massage scheduled for the day after having to meet with the care facility. When I really need it.

Yup, the "anything you need just call" crowd has again gone underground. I was down to two people out of a neighborhood full of "friends" and now those two have gone "poof!".

Oh yeah, and my body can't quite decide if my allergies are in overdrive, this is a cold or something worse with a cough that will not go away and an on-and-off runny nose. And no, I haven't dealt with the blood sugar and weight issue yet - go back to the doctor in July, figure I have a little bit of time there. Probably not but gotten good at lying to myself.

Why?

Why does this have to be so hard? Why does this suffering have to exist? What the hell did she (and I) do to deserve this? Why is it that her version of dementia has to be the sort where most of her cognitive awareness is there but physically she is going downhill extremely fast?

Why can't I have her home with me without all of this pain and mess?

All I know for sure is that I can't take care of her well any longer. I'm getting sick. I'm beyond resentful. This can't go on but...

She's mute. She can't use a call light/button. How the bloody hell is she going to get care anywhere when she can't communicate? How am I going to be able to pop in to visit her in the random way everyone tells you to so you can keep an eye on the staff? How is this going to work?

Why does it have to?

Oh yeah, and the boss who complains when I'm 10 minutes late for work and keeps telling me to put Mom in a home threw a fit when I took that 1/2 personal day for the meeting with the facility to, you know.... put her in a home.

Just shoot me, it'd be quicker.

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Denise

Hi Cat -- I'm so glad you're keeping us posted. I wanted to echo Rose's suggestion about hospice. You can ask the facility tomorrow if they can provide hospice care. It's worth a call to her doctor to ask about a referral to hospice; if he resists, you can contact a local hospice agency on your own. Sometimes, doctors won't refer carees to hospice until the very, very end. When that happens, you miss out on extra help and support. Hospice organizations have medical directors which can take over your mom's care if her doctor won't refer her. \r\n\r\nThis is the toughest love -- when you think about moving your mom. Be gentle with yourself and your mom. You're in a tough, tough situation making the decisions that keep your mom's care and safety the priority. A move will be difficult. You can keep kindness and compassion in your heart for both of you. \r\n\r\nLet us know how it goes tomorrow.

Susan

Just remember you are an incredible daughter and your mother is so fortunate to have you in her life. I was lucky in the sense that my mom broke her hip and that is why we were able to move her out of the house. It took two moves but she is finally in the right place--a licensed memory care center--and we also are able to use hospice which is wonderful. It took me quite some time but now I can see that she is getting better care at this stage of her life (almost 96 years old) than I could provide in the home where I took care of her for 7 years. She is happier and I am happier and that is a true miracle.

Rose31

I sure understand your struggle - it's a wonder you haven't gone stark raving mad! May I make a suggestion? Look into whether she may be eligible for Hospice. We enroll our loved ones in Hospice way too late. It sounds like she may be eligible. They can provide oversight, nursing, a social worker (For you!!) and volunteers. Please give them a call and find out if they can provide some of the support you so desperately need. Particularly in a home, Hospice workers provide that extra layer of supervision. I hope she is eligible, and that you have a good Hospice agency where you live. Hang in there!! <3