My father suffers from severe diabetes (with every possible complication) He has renal failure and is on dialysis.
He has recently become immobile and bed bound. Needless to say his general health is extremely poor and his cognitive function is suffering and it gets worse with every problem he faces.
He has a permanent live in caretaker- who changes him, feeds him and tends to his basic needs. My father doesn't sleep at night and often has many requests- like a drink of water, or he'll want to turnover or sit up. I got him an electric bed but he refuses to use it, or he can't... I can't really tell. His caretaker is becoming increasingly frustrated and wants to leave and it's getting hard for me to find others because the lack of sleep really gets to them. I don't know what to do.
Some of them will ignore him at night when his requests get too much but then he will start screaming for me at the top of his lungs.
I don't know what to do... Any advice?
I live with him, I got the caretaker because I couldn't handle this situation anymore and i often have to travel for work.
When I did hire 2 caretakers for two shifts- the night shift caretakers always had day job and thought they were coming to work from 8-11 pm and then sleep the rest of the night. They complained that they were too tired to go to their day jobs. Which is why I hired the 24 hr live in so he can adjust his schedule to my fathers ( who sleeps a lot during the day but also interrupted). The problem is any of the meds to help him sleep end up messing with his cognitive function so his dr. stopped them all.
I will try to find different people to work shifts who better understand the night situation.
I see that you really feel a care facility of some sort is out of the question but it sounds like that is more your fathers insistence than yours and while I can't relate entirely I get that a big part of the barrier is cultural and I'm wondering what do families in your culture do? It can't simply be up to one child to care for their parents at home both financially and physically until they pass, I mean while that may have been the custom in your dads day for instance it likely wasn't the case that the in firmed were being kept alive with dialysis, surgery and medications so they weren't as needy as long. You dad is choosing or allowing modern medicine to keep him alive longer maybe he could see the same reality of getting the daily care he needs as a result somewhere else. How did it get to be your home he is living and wanting to die in? Maybe other families of the same cultural background know of smaller facilities or arrangements that aren't widely talked about because of the cultural thing but actually provide the right care that works for everyone. Maybe making some inquiries or just finding some community members in your generation or with LO's your dads age or older (still with us or not) to talk to about some of these problems could prove more fruitful than you think. Wish I had better help to offer, sorry.
He won't like it. Who would? But, you've gone much too far already.
You MUST develop a plan, it's absolutely imperative! A plan of action will also save your sanity when you feel ready to snap. If it were me, I'd have snapped long ago, tell ya the truth.
Get father into a skilled nursing facility or he may wind up outliving you, my friend. His demands are outrageous and you know that.....realize, before it's too late, that you DO have options here, even if your father doesn't like them. It's not only his life and his wishes that matter, but yours as well.
He either respects others or he goes to a facility that will dope him into oblivion. His choice.
Anyone who has experience with skilled nursing facility have any idea how they will deal with his night demands? He demands range from, wanting to drink water multiple times, wanting to get turned on his bed , wanting to sit up on the side of the bed ( he has an electric bed) and sometimes wanting to sit on his wheel chair....I can't believe I am even typing these" demands".
Will they just drug him or ask him to deal with it, how will they deal with his screaming?
What's weird is that you can have a normal conversation with him most of the time But when I ask him about this issue he will just not reply.
Thank you for everyone who took time out of their day to give me advice- I truly appreciate it.
The NH is equipped to deal with needy clients, it is why they exist. They will take care of him as his needs require.
As CM said, this is their day job.
I am glad that you are willing to change things, NH are not the h3ll holes so many make them out to be and having an advocate means a tremendous amount.
Best luck finding a solution that saves your life and gets dad the care he needs.
He is losing control in all aspects of his life.. He can control someone at night. Perhaps getting him up sooner, and keeping him busier in the day may change his night time behavior. Seems like a child who doesn't want to go to bed... Role reversal.. can you get him to a daycare facility to be around other seniors and play bingo? Or an internet game that connects other people to keep him going during the day? Keep him busy. Give him towels to fold if you can. Laundry to fold and sort. Word games. Name that tune....
Take him to a facility and be frank with him, review some places. They will invite you to lunch and tour the facility. You can get wheel chair accessible taxi cabs/vans. Make a day of it, and schedule appointments to see some places. Yellow cab , if they are in your area may have wheel chair access vans. Tell him you are out of options, nobody is good enough dad, maybe this will be better for all of us.
6 packs, homes inyour area with 6 residents and 2 caretakers. They are good too. Look them up, and rive around your area, if you see a permanent wheel chair ramp, it may be a 6 pack. Write down the address and look it up....
Location, location, location, the closer to you, the easier it will be to pop in and see dad.
In home care is very expensive. My cousin finally movedhis mom into a facility. Mom didn't even know the difference. He said he wished he done it years ago. wouldn't make a difference, ALZ,......
guess ALZ runs in my family from both sides....
The key difference is that the staff on duty at night in a nursing home are at work. He is, so to speak, their "day job"! So if he wants a drink, or to move around (within bounds), or needs comfort, reassurance, changing... they'll just go right ahead, aiming to help him settle.
Moreover, the routine of a nursing home is much more structured than in a domestic home and will probably be helpful to his pattern of daily life.
When you discuss this with your father, you can truthfully emphasise that the level of care at a nursing home will be better *for* *him*. Do you have a particular one in mind?
You need to take care of yourself too.
I agree with you I see a nursing home working much better than the current situation. The night shifts that I have managed to arrange all have a morning job- think they are going to sleep and get paid.
You could tour facilities to see which ones are suitable. Some are absolutely horrible and you can turn around and walk out and keep touring until you find one that you feel will work.
I don’t know anyone that has said they found the perfect one because all facilities will have some issues. Look for the one that has the least issues.
When my cousin was touring facilities for my uncle she left immediately if the stench of urine and waste hit her as soon as she walked in the door.
The other thing she was told by a friend who worked (nurse) at a facility was to look for one where employees are always busy doing something because if all they are doing is talking in the hallways then they are neglecting residents.
When my mom was in a nursing home recently in rehab she was double dosed with meds and the LPN was foolish enough to tell my mom that she didn’t want to return later that evening to give her the last dosage of her Parkinson’s meds. She told my mom to take the double dose because it wouldn’t hurt her.
I was upset when my mom told me so I called her pharmacist and the pharmacist made a good point by saying if she did it to mom then she was doing it to others and it was my responsibility to report it to stop her from continuing it. She also said that everyone is different and reacts differently to drugs and that a resident should never be given a double dose of meds.
Of course I reported her. Don’t kid yourself in thinking everything will be running smoothly all of the time. You will have to monitor his care but it will no longer be your full time responsibility.
Things do happen in nursing homes but report to the head nurse and social worker to keep it from happening again as I did. I told them that I appreciate all of the hard work that they do but they do not have the authority to take liberties with meds. As long as they assure you that they realize the situation is serious and address it, take it from there and move on. That’s what I did. The nurse admitted it. She was guilty. She was lazy and guilty and putting residents at risk by giving them the wrong dosage of meds. That’s serious!
I didn’t expect perfection but I won’t tolerate behavior that causes a serious concern.
Choose a home wisely. All residents should be treated fairly but the residents who are treated the best are the ones that have family members monitoring. You can also check if a camera can be installed in the room. Here in my state it is perfectly legal. Why should someone object if they are doing their job correctly? Cameras are everywhere these days. People should be used to them. I wouldn’t care if I had a camera on me because I always had strong work ethics and did an excellent job at work.
Smart answer! It is just too much for only one caregiver.
You must realize this because it was too big of a job for you as one person.
Even hospice isn't around the clock care unless you can get him into an end of life hospice facility. My brother was in a hospice facility and the care was wonderful. The nurses were top notch along with the social worker and chaplain. Look into seeing if that is a possibility.
Write down your concerns or what you see in these different facilities. Compare, do your homework. And also know that it may be like secure deposit and/or first and last rent when moving in...
ASk them all the questions you feel you need to ask. Get everything on the table so you can visually see what it right for you and dad.