Are You Caring For Someone with a Physical/Mental Disability?

[shivadance]

Oh MaryKay, I'm glad they have finally come to the same conclusion you did! Took them long enough. It just shows how on top of things you have to be when caring for someone who can't care for themselves. At least if she has to go to a home you know you've tried to care for her and didn't just throw in the towel without giving it a chance.

I don't know how conscious your mom is of what you do for her, but I hope she realizes what an advocate for her health you have been and how hard you have working to get her the care she needs.

[Kate51]

Thanks for your update, you and Mike must absolutely wiped out. Will be thinking about you all.
I am hoping Mary Kay is having a wonderful time with her Grandson, hope Harry Potter was excellent, and Mom's doing ok.

[MaryKay]

Harry Potter was great! G'son and I had a good time! He has been really good about me spending time at the hospital, it's hard for a kid to understand why he isn't being paid more attention to, but it's part of the life learning lessons.
Mom isn't doing well. She had lost all abilty to discern what's real and made up. She can't swallow because her thyroid is swollen and that includes liquid. They determined she was becoming malnourished..not from home but since she's been hospitalized. She was eating well here up untill the last 2 days before she went to the hospital. They tried to put a tube down her throat..yeah..that was going to work! She called me right after she pulled it out and told me she was mad because I left her at the beauty parlor for so long and to meet her at the door. She had a really bad day there. I got to the hospital where I found her half out of bed with her legs stuck through the bars pulling on her I.V.'s. The Nurse said this was the thrid time they had to come put her back in bed!
The next day they put a feeding tube in her stomach. They had to bind it up to keep her from trying to get at it and put gauze around her I.V. ports too.
She has been yelling at people who she thinks are trying to perform odd ceremony's on her and tie her down (the surgery). She thinks people are talking about her and lying about her. When she screamed at me and tried to slap me..I left!
Today the dr. whom I waited for all morning came a half hour before I came back at dinner. He told Mom he was releasing her! What! If her neighbor hadn't heard him say it, I never would have believed mom.
Her surgeon came in and said he would teach me how to feed mom..I freaked and told him 'No damn way!" You are not sending her home with 6 I.V.'s, a feeding tube and oxygen and expect me to tend to a demented woman who can't walk or eat!
I have mild scoliosis and can't lift heavy objects without paying a price for days. Mike's heart and back can't take lifting her dead weight when she falls. She will not stay in bed..even one with rails, nor will she allow diapers at night, she will try to get up.
The nurse suggested a visiting nurse..well and good, who will watch her the other 23 hours?
I am sending her to a nursing home until she can eat and take oral meds. I also need her to be able to walk..even with a walker or cane short distances..like to the car or the bathroom (about 10 steps from her room). I am hoping once her thyroid gets back to a more normal function she will regain some of her mind. She was at the early stages of alzheimers before the thyroid went nuts so she will never get all the way back.
I am really paniced right now. I am tired of being told how bad I am treating her. (by her) I can guarantee I treat her as well as I would anyone's mother. I treat her better then she ever treated me. My issues with all things medical make me cringe at the thought of any medical procedure done on anyone, much less asking me to do anything to anyone myself! The whole beeping, needles, disinfectant smells and strangers trooping in and out all day stuff makes me crazy. That includes visiting.
Sorry, headed in to rant territory there.
I'll let you know, when and if anyone bothers to let me know, what's going on.
Night all.

[MaryKay]

I found a Nursing home close to our house. It is about 5 years old and very nice. The admin met me at the hospital and talked with mom, went through her records and said she would be ready with a bed as soon as mom is released. They have a full staff including R.N.'s and A Dr.'s group that cares for the residents. I was more releived to find out that the group was the same one Mike used when he had civial Dr.'s..very good people! The rehab is good, I went by on my way home and took a quick tour. The nurse said they have each resident go to rehab daily and teach them to walk with a better gait, stand and sit without just flopping down and breaking something and how to get in and out of bed. They will also give me lessons on how to get her up and down that won't tax my back.
The best part is that they will order and send home with mom things like a bed rails, wheel chair if needed, a walker..we have that and bath aides.
She can't be released from the hospital until her cardio and primary Dr's agree. She is still recieving a drip for her heart. So now they tell me it will be at least Mon. before she is released to the nursing home.
She is still very confused and was smiling at talking to the admin. like they were old friends..the minute the woman left, mom wanted to know who she was and when she could go home. Sigh...

[Kate51]

Mary Kay, what you have done is the ONLY thing you can do! And Can't imagine what those people as hosp were thinking, they weren't!!
You're dealing with a demented person, there's no rhyme or reason to her actions, so you can't take them in a personal way, although I know you are. That's not a sane person's logic going on. Maybe you're the whipping pole because you are most familiar to her, it's not because you don't treat her right or good in her mind but because you treat her. You could turn green and it wouldn't make a difference in her perceptions. But to her it's real. Anything in your mind is as real as real (through rose-colored glasses).
So happy that your Grandson is seeing this first hand. It will make him a better person, one with some empathy for the human side we all have. And he's seeing you in a little different light as well, the caregiver regardless of the negative. I know it makes you feel crappy and it's so sad to think this is what you get back from her. I think you deserve a pat on the back for being who you are because of where you came from. Life was her hell, I think. But your memories of coming up from that will be the hell in your life, keep them in perspective. Heck, my youngest thinks I'm a witch! Speak to those people at the Home, they will tell you likewise. Maybe in a much better way, LOL.
Glad Potter was good! You can sleep well, I hope. And Mike also. The two of you are getting a respite, finally. Take a deep VAPE!!
Have been waiting for you to update us, THANKS

[MaryKay]

I called the hospital and told them I was feeling sick and wouldn't be in today. I am so tired and stressed that my blood sugar went nuts. I haven't had any bad foods and took all my meds..but it went up anyway. They said she was really quiet today. They started her on the Thyroid meds..finally!
Last night she pitched a fit..literally. She threw her dentures to the floor and broke the bottoms. She has lost so much weight that they don't fit anymore. The lady from the nursing home said they would see to it that she gets new ones. I had been waiting until she started gaining back weight and was calmer. There was no sense in taking her to a dentist while she was so agitated. No to mention getting new teeth that won't fit a month from now!
I am enjoying my day off. This is the second day I haven't seen mom since she came to live with us a year and a half ago! I took one day to go to Tampa for a charity dance in Nov. (my avitar was taken on that day)

[MaryKay]

Went up to see mom today! OMG! It was awful. She has had her arms strapped down..not tight, she can touch her finger tips together and reach her face, but she can't get up or reach her I.V.'s.
When I went in, she started asking me to move the board...these things!(moving her arms to wiggle the straps.)
I had no idea what she meant. Then I realized she couldn't think of the right words anymore. Then she wanted me to open the can. I saw a can of insure (for her stomach tube) and asked if she meant that and she started yelling at me about her how her hands don't work anymore..just open the damn can! When I started to say I couldn't let her drink, she took a swipe at me!
Off I went to the nurse (they have mom just across from the desk) and as soon as she saw me she started explaining why Mom was in restraints. It seems she tried to get out of bed 3 times last night and pulled her I.V.'s out twice. She said Mom was stuck in the bed rails and hanging half in and half over them by the time they could get to her. (for how long I wonder?) The Dr. had her restrained to keep her safe. I told the Nurse I asked for something to calm her down on the first night! It's sundowners, alzheimer's patients get more lost, confused and agitated as the day wears on. They tire and get upset very quickly. It seems Mom is bad in the daytime now..but even worse at night.
The Nurse also explained that Mom's white blood count is off.. I forgot to ask if it was up or down and her heart is really beating fast (due to thyroid) she is on cumindin already but they added another one. I was kind of upset and didn't take notes like I normaly do. She isn't leaving the hospital for a while.
I don't see her mind returning after a month of thyroid medicine they just started. She is really far gone, she tries to talk but the words are all mixed up. She still knows me but I seem to agitate her..maybe she thinks I ought to be doing something to get her out of this.
While I was standing by her, a young nurse came in to check her drip and Mom told her she was going to have to raise her rent! The Nurse (Bless her heart) said That's fine Mrs... It's a nice place so I will pay more. That pleased Mom for some reason and the young Nurse told me that's the third time today Mom raised her rent. LOL
The older Nurse looked at me and said "How did you deal with all this on your own"? I told her Mom was losing it a bit before she came to the hospital..but nothing like this!

[MaryKay]

The news is not good. I saw Mom today and she still knows me, but not where she is! At least the restraints are off. She forgot about her old surgeries but recalls with details, one she never had! The Dr. even looked for the scar..needless to say he was a bit baffled.
She now has pneumonia, She had the pneumonia shot 3 years ago, but all this laying down isn't doing her any good. If she stays much longer in the hospital...who knows what she will get!
My cousins are so concerned, Mom's only brother asked them to help me with mom before he died. Mom has always been a handful and he knew it! So the three of them call and e-mail me all the time. They want to come see her but they live in 3 different states. I keep them current in e-mails.
I thought she would be in the nursing/rehab by now, concidering they were going to release her last Saturday.
I asked the nurse today if mom was dying. It sounds awful but this is just so stressful, it would help to know. then I could tell my cousins to come down or call her. She of course just said it could go either way..there's a pro for you. The Dr. said they are doing all they can and that when the thyroid meds kick in..in a month..we should see improvement. meanwhile her list of ailments grow. Her cardio Dr. is upset because her heartrate won't slow down, her Pulmonary Dr. can only do so much with damaged lungs and her primary is at wits end.
Mom is worried about what type of T.V. she has in her room, Zenith???

[Kate51]

We'll be around here. You'll do well to get some rest!
Today was the first time in a long time the Forum was "off", couple times.
It's all this with the FDA. Amazingly, I never saw any rivalries going on for the last two days!
Am waiting for my Nancy Grace to show up, it's such a farce show but I enjoy it anyway. All the breaking news that isn't is kinda funny, if you're in the right mood. Then I gotta go to bed, I have a house call at the hospital tomorrow. Yes, you saw it right, they have some "holey" chairs I have to just patch for now, till the inspectors get done. Little pin holes, can't have that. I think I've covered just about every piece of upholstered furniture in that place by now, starting over again.
Later!

[MaryKay]

Things are looking bad. mom is having more and more problems. Now her heartrate is getting very low, from racing a day or two ago. This would have been encouraging if it hadn;t dropped so far so fast. She is also beginging to reject her her food that they give her through the stomach tube. between her pneumonia and weight loss, they are watching her all the time. Today her hands and feet were ice, but she was complaing of being hot. I felt her neck and chest, it was burning hot!
For the first time in her life she said, I don't think I am going to make it! That scared me worst then her heart rate! My cousins will be here tomorrow, not a minute too soon in my opinion.