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Any advice for dealing with long, drawn-out illness?

post #1 of 7
Thread Starter 
My grandfather will be 95 next week. He has always been in good health generally, and even at his age and in his condition now he looks at least 15 years younger than he is. He was always active and alert and strong, and he is not handling his now-declining health well at all. He has multiple issues and each one has multiple complications that he just deals with, but he to the point where he's not strong enough to care for himself and he's in a nursing facility. (He was living with my mom, but he kept falling and she couldn't help him up. The EMTs told her they wouldn't come to help him up again, that she'd have to find an alternative, so they found a great assisted living place. Unfortunately, he was only there a month or two before he really went downhill and is now in nursing care.)

He's not in much pain, just tired, and not strong enough to move around on his own, even in a wheelchair. His eyes are failing. His hearing is failing. And his brain is still going, so he's lucid, but obviously not happy with the turn of events. I go to visit him once or twice a week, and it's really upsetting.

I know he's aware of what's going on, he always knows what day it is, etc. And yet, the staff there treats all the patients like they're zombies. They get parked in their wheelchairs wherever, and they have no way to call for help if they need it. Gpa can't get in/out of bed alone, and last time I was there, was parked in his wheel chair out of reach of the buzzer. So he was stuck there, with his back to the door, until someone came along by chance. Today, I brought him back to his room when he got tired, and went to find someone to put him to bed. I asked FOUR people before I got someone to actually come to his room, and by then (40 minutes later) he was asleep in the chair. I was in tears.

How can they treat people this way??? And this is supposed to be one of the best places in town. My heart breaks for him, and for all the people who are stuck with lesser care. This is no way for him to spend his final days/weeks/months/however long he has.

So I'm grieving his imminent death, and his current living conditions at the same time. It's eating me up. I can't stand the thought of going back there and seeing all this again, but of course I can't stay away and just not visit. He doesn't have much family nearby, and I'm the only one within 25 miles, so no one really visits him at all except my mom and me.

I'm sorry to ramble on, I can't seem to organize my thoughts anymore. I'm just so sad for my Gpa and also so scared at the thought that I will be stuck in that wheelchair one day with no one to come help me when I need it. It's such an awful feeling.
post #2 of 7
Hug....it is really hard to see a love one go down hill. Remember the little things will make him very happy. Brush his teeth, help bath him, rub his back, read children's picture books(they are really great for love ones losing there sight), change his socks, ect. Most likey the staff is trying...but it is really tough to work in nursing homes.

I suggest that you visit in the morning or whenever he is most awake and alert. Also try and see what activities are available and bring him. Even if he does not do the activity it can help him feel normal.

HTH

Kim
post #3 of 7
Thread Starter 
Thanks, Kim. Unfortunately, there are too many reasons why we can't do all those things for him (except the kids' books, and I'm not sure he'd want that...).

When we got there this morning, he made a comment that some of the staff were great and others didn't act like they care. I immediately thought that they are just keeping their distance emotionally, since I know it would be hard for me to bond with a patient who is going to decline and die or move out. I used to live in an apartment building with a ton of older folks and it was so hard to watch my neighbors (friends, really, even though they were my grandparents' age) struggle, get ill, die, etc. So if that were my job EVERY DAY, I know I wouldn't be feeling friendly. But this went beyond not asking how he is when they see him. It's outright neglect. Four nurses/aides were standing around chatting while I was trying to find someone to help him. One of them was assigned to his room, and STILL didn't help when I pointed that out to her. She just wanted to argue that no one had told her. Well, I was telling her NOW, and she didn't move to do anything. I wanted to slug her.

We had a great visit with him before all that, and I always ask him if he wants to do the activities, wants a paper, books, photos from his apartment, etc. and he doesn't want any of it. He's a stoic, and would be mortified if I offered to help with anything having to do with hygeine. And, I think, insulted if I read a children's book to him. His mind is fine. It's his body that's failing. And he's exhausted all the time, so no energy to talk about the old days or anything. I feel like it's an impossible situation. I'm fine with going and visiting and bringing my son, who is the only one he smiles for. It's when we're not there to advocate for him, which is most of the time, that upsets me.

So yeah, I started this thread asking for advice about dealing with a slow decline, and got a great answer that I just shot down. And the level of treatment he's getting is overshadowing all of that anyway.... What a mess. I'm sorry. I do appreciate your answer and I think your suggestions are great in general. Gpa is just not that guy. (Our whole family is a little strange that way... We love each other like there's no tomorrow but no one wants another family member doing those things for them. Gma was the same way, and so are both my parents.)
post #4 of 7
I work in a nursing home and I can tell you that there are wonderful workers and there are some that are just there for the paycheck.

As for the putting him back into bed, I know with our job, we need to put the people prone to bedsores into bed first. Even if requested by a family member, we need to put certain people to bed first. But there's absolutely no excuse for your grandpa to be parked in his bedroom with no call bell. That would be terrifying for him not being able to see, not being able to hear, and being tucked in a room with no way to get help.

I am one of the ones who gets emotionally attached to my residents. I cry with them, laugh with them, and treat them as I would my own grandparent. And when they do end up passing away, I cry at work, I cry when I go home, but I wouldn't do my job any other way.

I'm sorry to hear about your grandpa. I would defenitely bring your concerns to management and maybe they'd be able to help you out. Does the facility have care plans? Maybe they could include an afternoon nap in the care plan so that ALL staff knows that after lunch the family requests he be layed down in bed for a nap. I find that the more details that are on paper, the more it is followed by all staff.

post #5 of 7
I'm so sorry you are going through this. I can relate somewhat as my mom and I just had to place my dad in a nursing home. He has advanced Parkinson's disease and can't walk anymore, so my mom isn't able to care for him at home. I have also seen that although some of the staff are wonderful and caring, others are not. We have also had some difficulty making some of my dad's needs and desires known. It does seem to help if you can "make something official" in someone's chart (or care plan, as babygrant said). We are fortunate because we live only blocks away, so it's easy for us to stop by and check on him, but I was thinking maybe you could call at certain times to check on your grandpa. Do you know if you can call and speak with his assigned nurse whenever you want to? Maybe they would be more likely to be on the ball if they knew you would be calling often for updates. Hugs to you and to your grandpa. I hope that things get much better for you both.
post #6 of 7
Thread Starter 
Thank you all for your advice and empathy. My mom had scheduled an appointment with the director to sort all of this out, and it had to be delayed b/c of the holiday weekend. We went over on Wednesday for his birthday, and on Thursday they called to say they were taking him to the hospital. He passed away that evening.

So, ultimately, it wasn't as drawn out as I originally thought it would be. But on that Wednesday, he actually showed interest in some of the kids' books that were on the shelf in the play area. (We'd wheel him down there to watch my son play.) So yeah, even though he couldn't read per se, the big colorful pictures were at least interesting to him, which was a big surprise to all of us. I wish I'd thought of that/gotten that advice earlier!
post #7 of 7
so so very sorry for your loss
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