Follow
Share
This question has been closed for answers. Ask a New Question.
Find Care & Housing
I never had that problem, so I'd appreciate hearing what you did. The home where my parents were gave very good care and the only hospital visits were when there was a fall and someone was hurt badly enough to need a checkup.

If I had the problem you describe, I would get the doctor to take charge. If the doctor says the person should be admitted to a hospital, then the nursing home should comply.

Carol
Helpful Answer (0)
Report

Hi Carol,

Things have been crazy and am just getting back onto site. We had been reporting many concerns that we were seeing with the care my mom was getting at "N.H.". (She has Parkinson's and the type of Dementia that goes along w/it. Earlier on when responding to a question, I went into detail on my mom). This one particular day, she went from walking & communicating to the next day - no strength, etc. We asked them to do a UTI sample. Over a week goes by and by this time mom is really bad off and to top it off, they were leaving her with her Time-Released meds. in her mouth to chew on. Finally, We stayed one day until they did the sample -By this time, the infection was really bad. The following week, mom couldn't even lift her head, talk or anything. Again, her pills are still in her mouth. This time I said, My mom needs to go to the hospital - The director asked what was wrong and wanted to know if her vitals had been checked - This other director comes down and takes her temp. & vitals and says everything is great. My mom's head was burning up, she was barely conscious & if you barely touched her skin, the only thing she could do was moan in pain. So, then she says, how old is your mom anyway - I said 75 - why - her age has nothing to do with it - She goes, your mom should have aches & pain at her age - I'm not even close to her age and I have aches and pains. I could not believe it. That is when I came unglued. I told her that my mom was not a hospice patient, that she would get treated and that she was going to go to the hospital. She tried telling us that they would not send my mom to the hospital and wasn't going to call the doctor. That is when I started dialing the phone - She came back to the room and asked my mom if she wanted to go - mom gathered all the strength she had and got the word yes out. Whe the Paramedics got there, the charge nurse says to them - She only has a minor UTI but the family insisted on her being treated at the hospital.

TO SAY THE LEAST, WHEN SHE ARRIVED, THEY COULD NOT BELIEVE MY MOM'S CONDITION. HER TEMP., AS I COULD TELL WAS JUST UNDER 104' (NOT 98' AS THEY TRIED TELLING ME), SHE WAS LITERALLY BEYOND DEHYDRATION, SHE COULD NOT MOVE ANY PART OF HER BODY AND COULD ONLY MOAN IN PAIN. SHE HAD A SEVERE WOUND ON HER BACK SIDE THAT THEY HAD LIED TO ME ABOUT, HER LEGS FROM TOP O HER THIGHS ALL THE WAY TO HER ANKLES WERE BRUISED. THEN, THAT NIGHT THE HOSPITAL CALLED AND SAID THEY HAD TO DISCOMPACT HER & SAID THAT SHE WAS FULL FROM ONE END TO THE OTHER AND SHE PIECE THEY TOOK OUT WAS BIGGER THAN A BASEBALL.

I know that the only time my mom was getting fluids and food into her was when we went in, which THANK GOD, we went in every day. The week before this, there were (3) days we weren't able to be there, but that was the only time we had not been in with mom. I'd be willing to say that she had nothing those days. There were also some other things they had done, but she is out of there. The hospital was wonderful. She is now at a new facility and they are awesome. From the condition the former facility had her in, noone was certain if mom would be back on her feet at all. Yesterday, my mom for the first time in two months, was able to walk, with her walker w/someone right w/her up & down around (2) hallways and then some.

It just blows my mind what my mom endured because of pure ignorance & neglect. My husband & I had cared for my mom after dad died, two years ago this coming Memorial Day from bladder cancer. So, I knew what mom took for meds. & when and also knew what stage she was in. Yet, they had tried to tell us that she was in the condition she was in because she was in the last stages.

I just thank God that I did know my mom's condition from being with her on a daily basis from day 1 of diagnosis and had been caring for her.

THE MESSAGE I REALLY WANT TO SHARE IS THIS: ONCE YOUR LOVED ONE IS 24/7 EYES ON CARE AND YOU END UP HAVING TO PLACE THAT LOVED ONE INTO A FACILITY, STAY IN CONTACT, IF POSSIBLE ON A DAILY BASIS/AS MUCH AS YOU ARE ABLE TO. DON'T JUST GO BY THEM VERBALLY TELLING YOU HE/SHE IS FINE OVER THE PHONE. IF YOU KNOW SOMETHING IS NOT RIGHT AND YOU WANT THEM AT THE HOSPITAL -THEY CAN NOT REFUSE THEM. IF THE FACILITY REFUSES, THEY DON'T WANT THE HOSPITAL TO SEE THE ABUSE & NEGLECT THAT NEVER SHOULD HAVE TAKEN PLACE. GO WITH YOUR HEART'S INSTINCT. THE HOSPITAL TOLD ME IF MY MOM HAD NOT REACHED THE HOSPITAL THAT SHE WOULD NOT HAVE LIVED. I PRAY THAT WHAT WE WENT THROUGH WILL PREVENT MANY OTHERS FROM GOING THROUGH THIS.
Helpful Answer (3)
Report

Dear lilliput,

The scary part is -My mom had been there the year before 2x, but only as skilled rehab. because of a fall that she had. The 1st time was just before dad died w/blad. cancer. She was home for 14 days when he died. Then, the 2nd time she had moved in w/us when she got up w/out her walker and legs gave out. So, this last time, she went in as skilled, but because it was just getting so hard for us to take care of her because she would continue to get up by herself and needed eyes on 24/7. During the night hours were very difficult. My son was 9 (now 10) and not getting his sleep & going to school, my husband & I both exhausted from being up all night every night.
So, the hardest choice I ever had to make was to switch her to long-term care. The skilled care was fine - I loved the therapists, but once she switched to long-term - they stopped working with her after a certain amount of time. When we were not there, they would just leave her in a chair. My mom knows who everyone is,but the problem w/the dementia is that what they are thinking about at the time is sort of reality to them, as well as trying to separate when they wake up from sleeping - What they dream is reality. So, after she was switched over, when we would visit, she wouldn't have anything to drink and you could easily tell she was getting dehydrated, as well as she would be chewing on something and come to find out it would be one/more of her time-released pills. Then, we would have to go get what she needed. Then, it got to the point that when mom needed to go to the bathroom, they would wait until it was too late. The rolllercoaster effect just gradually continued. The director actually threatened the employees to not discuss my mom with us. The thing was that they knew that I know everything mom was supposed to get for meds. & that I Know all of the processes that go with mom's condition. When my mom became long-term care - They actually tried to talk me into putting her on hospice. There was no way - My mom was far from the last stages and now that she is being taken care of properly, she is far from the last stages again.

To try to best answer your question about how to know where to place your loved one - Instead of calling for a tour of a facility, go in at different times, try to see if the residents are getting their faces cleaned off after having a snack, etc., if it's obvious that they need a tissue, is someone assisting them or are they just walking past them as if they are fine, Observe the odor of the facility. When you visit the facility, interact w/the residents as if you are a family member from out-of-town and that way you will know if they are being toileted, bathed, are their dentures/teeth being taken care of. Before my mom went into this facility(After what we had just dealt with) we visited three others before this one that she now is at. We could tell immediately! (The food even looked good) It didn't smell at all, the residents were clean, the interaction was on a personal level and very genuine, the whole feel of the place was different AND they do physical therapy with them as long-term! The therapy that mom got at the 1st facility was nothing like the therapy that she is getting at new facility. When we were checking it out while mom was still in the hospital, the therapists were remarkable with the residents and there weren't even any family members there for them to have to put an act on for and they didn't even know we were there. SO WHEN YOU VISIT A FACILITY AND THERE ARE NO FAMILY MEMBERS VISITING AND THE RESIDENTS ARE BEING TAKEN CARE OF AS THEY SHOULD BE AND THAT THERE IS A PERSONAL LEVEL OF CARE HAPPENING, ALONG WITH THE OTHER THINGS I MENTIONED, OH, AND THAT THEY SPECIALIZE IN YOUR LOVED ONE'S CONDITION, then it's a really good sign. Also, when you meet with the facilitator and that person is the one that encourages family participation & listens to your concerns and be upfront and tell them your concerns and expectations.
Just never be afraid to ask if certain needs are being taken care of. A good, caring facility would think that something was wrong with you if you weren't concerned about the care for your loved one to make sure everything was being done. I hope these things help you. God Bless & Thank you!
eacorinth@aol.com or my other e-mail is: easavedbygrace@aol.com
Helpful Answer (2)
Report

Good Morning Lilli,
It is scary, not knowing what to expect. I am also very protective of my family and knowing that fear that you know that is going on in them is difficult. My mom will start crying because she will catch herself being confused. My mom was also very independent. When you are with your mom, watch her balance and her expressions, as well as her congnitive thinking. Incontinence also goes hand in hand w/this. As time goes on, your mom may start seeing/hearing things that are not there. Many times, their dreams and thoughts at the time is what is real to them at he time because their brain is not as able to separate the difference. Even now, my mom will ask about dad, but then say I know he is in Heaven and say I just get confused and can't sort things out. (Even though it will get difficult) there will come a time that you will just g along and make conversation about what your mom is seeing or thoughts she is having. The brain will not process things quick enough. One of the ways a neurologist diagnoses Parkinson's is the facial stare, as well as their gait. It will literally take over the function of the muscles all through the body. My mom started tripping & having dizzy spells without realizing it until she was on the floor. A sure sign to also watch out for is a U.T.I. Many times they need to be reminded to drink, as well as their ability to get themselves "clean" after toileting. If you notice extra confusion & weakness, these are a good sign of an infection. My mom didn't have the severe shaking that will also go along with it. It was strange because everyone thought dad had Parkinson's because of the tremors he had developed in his arms and legs. Then, mom ended up with the diagnoses.

Do you ever spend the nigt with your mom? Maybe you could suggest to your mom a night together for dinner and a favorite movie/game and a sleepover. This is a good way to really observe what is happening. Another way is to watch your mom in a store. The decision making will change, as well as her ability to make change at the register.

Do you know what stage your mom is in? When mom was diagnosed, I went to the computer and studied up on every possible thing I could think of to know what to ask the doctor about. There is a med. that I was able to get my mom switched to. The med. "Stalevo" is Carbidopa & Levodopa, except the Stalevo has what is called "Entcapone" in it that increases the dopamine in the brain, which increases their brain & mobility function. This med. has been a life-saver. Aricept, Requip and Namenda also work really well together with the Stalevo.

Are you familiar with the Elder Independence Services? What they would do is have a person come out and do what is called a "Goold Assessment" to see what areas your mom needs help with. Then, what they will do is let you know how many hours of help they feel your mom will need. Then, Elder Independence contacts agencies that do Home Health Care, which will help her with physical needs, as well as cooking, cleaning and transporting to appointments and shopping. Human Services should be able to give you the contact information.

Most important Lilli, Don't ever beat yourself up! It is so easy to say I should have done more or simply the feeling of being helpless. Allow God to be your strength. Don't ever be afraid to reach out to others. I am so proud of you for responding to my e-mail. It's not easy & it is scary. I just wish that I could make my mom all better and to remove her fear. Remember, it is OKAY to Cry. Trust me, I think God must get tired from hearing from me, but He doesn't. God will hep you through every step of the way and so will we. This Website is such an extended blessing. The people understand and talking and sharing what we are going through is one of the biggest steps a person has taken. There is not a feeling/question that doesn't make sense.

YOUR MOM IS A BLESSED LADY TO HAVE YOU! YOU AND YOUR MOM WILL BE IN MY PRAYERS AND DON'T EVER HESITATE TO ASK QUESTIONS OR TO QUESTION HER PHYSICIAN.

Sincerely - Beth (easavedbygrace@aol.com)
Helpful Answer (1)
Report

What you went through is my biggest nightmare. Institutions are only as good as their staff and leadership. Some are better than others...but how do you judge the quality of care until one of your family members ends up in one?

I am so sorry that the impersonal director made you jump through so many hoops to get your mom the appropriate care. But I am with you...I will bring down the roof on someone's head if they try to refuse care to one of my family members. And you are correct, you have to check in nearly every day. If the staff sees no one attending to a patient, they are left to fend for themselves.

When my mom was in the hospital, the elderly woman in the next bed had no one to visit her. You cannot believe the tests the doctors wanted to do on her because no one was there to advocate for her. When I was there one evening a doctor came by and asked if it was okay to do this really invasive test and of course, she agreed because he did not explain how grueling it was. I coughed really loudly to signal that I was listening to the conversation. Suddenly, he says, "well I guess we can try some other tests before we resort to this one." INCREDIBLE. I felt so sorry for her.

I should not be like this. No matter what age you are you deserve to be treated with dignity and be given the appropriate care.

Bless you for being such a strong and loyal advocate for your mother.

One question: looking back, what questions would you have asked at the first facility? or what things would you have looked for? what would have helped lead you to the second, better facility? thanks
Helpful Answer (0)
Report

My mother has Parkinson's as well but is still able to get around with a walker. Basically she can still do a lot...just very slowly.

She is fiercely independent so I am doing my best to help her stay in her home until it is no longer possible. She refuses to live with family. And this is where my stress comes in. I wish there were an interim housing choice somewhere in-between assisted living and nursing homes. Perhaps smaller facilities that can be more customized in their care. Of course, I sure that would be very expensive.

I am very hands on in helping my mom with all her needs. It freaks me out when she has a hospital stay let alone being in a new environment permanently.

Your post really helped ease my mind. Knowledge is power and I want to be prepared for the future a little more than I am now. I guess the hardest thing is that I do not know where her illnesses will take her and what kind of care she will need. I just need to take one day at a time.

Thanks again...Lilli
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.