Who Has The Answers

Nursing Home



Some of you may think I am the most difficult person to get a long with in the nursing home with Al‘s staff. I promise you I am very fair. I have never screamed or sworn. Today I could have though.


The video I placed on here is how I saw Al today. I walked in on his lunch period and he was behaving the same way. Along with Al’s Parkinson’s Disease, he is also mentally challenged. Now he isn’t mentally challenged like you think. You can observe some of it by looking at him. Mainly his is in his thinking. He thinks for the moment. He only thinks in the future if it is a creature of habit.


I hate to admit it but I am a wreck. I am shaking inside. I feel like I just want to lie across my bed and cry until there are no tears left to cry. I do feel like I have no where else to turn. No other avenues.


When I walked up to Al his glasses were lying on the table. This is a sign to me that something is wrong. He spends a good part of his day very emotional, so I try to take this into great consideration when Al is upset. Sometimes he can get dramatically upset over trivial things.


Remember last week when I told you I stayed in the corner like a mouse and observed the staff telling him they could not push him down to his room? Well today, he was having an exceptionally bad day. Lots of pain. I don’t think that extra small dose increase is helping at all. Why don’t the doctors do an increase, instead of a baby step? I know, one step at a time. I don’t want Al to be on these strong pain pills, I just don’t want him to be in pain. Does that make sense?


Excuse me for being all over the place here. My mind is running much faster than my thoughts are. So Al and his dining room mate explains that the nurse told him to push himself down to the dining room. Now for you and me it is about a two-minute walk. For Al it takes much longer.


I want to believe the specialists that we saw in Florida who said that this bakers cyst that is growing into the back of the knee bone is painful. Every time Al bends his knees it causes pain. Now add the nerves being twisted along the shrinking muscles in his legs and I can only imagine how that would feel.


Al’s problem, and I state it this way, because the staff always blames Al for what is not done. The nurse told him that he needed to push himself. Al did, but what his mentality did not do was to let an aide or a nurse know he could not make it completely to the dining hall and he needed help the rest of the way.


He just kept on going and then the pain seared like a branding iron. He would not eat, and when he tried the tremors were so violent that the food went flying off of his weighted spoon. Al’s face was bright red. It was so red and splotchy I could not even have the nerve to snap a photo to show you.


I listened to the story of both Al and his buddy and I was fuming. The reason being is I have explained and explained until the color has been drained. I have smiled and smiled while speaking so I don’t look like a jerk and a grown child.


I went to the nurse and said, Please explain Al’s red face and why he is sitting down there an emotional wreck. He can’t eat and is totally a mess”.


She says,” I told him he had to push with his feet to go to the lunch room. I also put lotion on his face after he shaved”. To tell you the truth my friends, I am so sick of being the nice guy, I just want to scream to anyone who will listen. I want to put on my little red tail and red ears and go marching somewhere. I don’t know where, I just for this moment don’t give a crap about anything. I feel like I can’t win.


I told the nurse with my plastered smile,” I have explained over and over you are not to let him shave himself. He shaves in the same spot until his skin is raw and bleeding. I have repeatedly told every nurse that he is to have baby oil dabbed on his face, not lotion. There is alcohol in lotions and it turns his face beet red. He has cradle cap like an infant from the Parkinson’s Disease”. She smiled and said, “sorry, I forgot”.


I explained again about the bakers cyst and the nerves being pushed into the muscles. I told her if Al is having a good day, by all means I want him to  use those muscles, but if he is having a bad day, I want your staff to help him.


She said,” Our goal is to keep him walking”.


I said, “I understand this totally and so do I want him to walk. But we don’t get everything in life we want.. If he is hurting help him. You have to remember his mentality does not help him to stop and think, hey, I can’t do it anymore. I need help”.


So she says,” So what you are saying is you want us to quit encouraging him to walk. You want him bedridden”.


I started to tear up and I didn’t want to. I forced those tears to remain in the eye lids hiding until I got out to my car. I said for the last time,”If he can do it, I want him to do what ever he can to keep his strength. But if he can not and is having a bad day, for heaven’s sakes help him. This cost 7,000 a month just for room and board. Surely someone can push him sometimes”.


The last thing she said was, “Well you know that he is in the dining room. Does this mean you want us to push him back to his room, instead of you”? The tears started to fall from my eyes and I turned around with my tail between my legs and walked away.


I had lost the battle. I wasn’t getting my point across. I saw shades of grey. They see black or white. I walked back down to where Al was and I sucked up the tears before I sat back down with him. He told me,” I want to go home. They don’t care about my pain”.


Part of me agreed but I am scared in a way to bring him  home. Why? Because they have drained him of his money. I have a little bit here for emergencies for him. How could I afford to hire a caregiver, and could I take care of him totally by myself.


I wanted to come home and call Hospice but no matter what anyone says, this hospice here in my town keeps saying the same thing over and over. He has to have six months or less to move.


In my gut I know I could do a better job then they are. Partly because I care so deeply for him and I have compassion.  He is in the middle of being switched over from Medicare to Medicaid. I am not sure it is a smart thing to try to switch him to another nursing home when he hasn’t been Medicaid stamped yet with the words of approval.


What if I bring him home and they don’t let the Medicaid process continue? What if they toss it in the trash because they are no longer going to benefit from him? I don’t want to bring him home if I can’t get the job done and I don’t want him in there being ignored.


They have one goal. Keep him walking, but where does that goal slow down and begin the comfort stage? The more that they push him the more pain pills he requires. Pretty soon he will be so drugged up he won’t know his name.


I have many concerns and  I can’t get anything straightened out. I can’t get anyone to see he is a complicated human with special needs, he is more and more unhappy there than he was at home.


I just don’t know what to do anymore. I wish someone could help me figure all of this out. All I want, all my goal is anymore with Al, is to have him feel peace. To go through this journey of pain with as little as possible. I am no longer interested in seeing him walk a mile or a block.


I had him push himself from the dining room. I taught him to tell me when he was hurting too much to keep going. He made it on his own for about fifteen feet and then he began to cry because it hurt worse. I took over the pushing. We got down to the nurses station that we have to pass to get to Al’s room and she asked, “Why are you crying”?


Al said,”I tried, I really tried. I made it for a while but then my legs started hurting real bad”. Guess what she did? She popped him a pain pill. So this is why I think to myself, pain pills from over doing it, or less pain pills because we are helping………….You tell me, because I don’t know anymore

When we got back to his room, he told me he was wet, and believe me, I could smell it. He asked for a clean brief and then I found an aide to help him change. She came in and got a clean brief out of his closet and handed it to him. She didn’t ask if he needed help but turned around and told me, “He’s all set now”.

I sat in his recliner while he struggled to take two shoes off, his long pants and the wet brief. I watched the clock. It took him 11 minutes to get those things off. He had worked so hard at taking them off that he was a sweaty mess now. He couldn’t get his feet to lift off of the ground to put the clean brief on. I bit my lip watching him and then he looked up at me, and I asked,”Do you want help bud”? He shook his head yes. I went in and helped him get the new brief and  his long pants back on. Next I helped him get into bed. He was exhausted from the work he had just done. His legs just don’t want to co-operate anymore or at least for this moment of the day.

I left him getting ready to close his eyes and went to my car and cried.



41 thoughts on “Who Has The Answers

  1. Terry, give it some more time .. because Al likes it there and he have got use to the people there and the staff. Maybe now when you have spoken your mind – things will help. Also if you bring him home and it doesn’t work, you have to send him back and that’s not fair on Al neither. It’s a very difficult one – but don’t do anything when you’re upset and don’t think rational.


  2. First, letme say I am glad to hear from you. It had been over a day, and that’s not like you…I was worried.
    Second, as you know from working in them too, not all nursing homes are alike. This one sounds appalling. But I think you are right about the damage if you pull Al out while he is in review. Please talk to a county social worker, or the Senior Assistance helpline in your area, about how to change locations and keep your funding intact. Have you looked at Assisted Living? Not sure if Al needs more help than that, but if he is not doing rehab he may be a better candidate for that.
    Also, with Hospice…there is no reasonable way to know anyone’s expiration date! not for Al, not for anybody. Perhaps it is only state by state, but it was my understanding that hospice is no longer allowed to say that “6 months” guideline anymore, since there is absolutely no way to enforce it.
    This is a lot for you to deal with everyday. It sounds like resources and advice are thin down there. It is like a full time job for you to figure all this out.. Maybe you can research all this on Al’s behalf, and then develop a counseling center for others in your same position.

    I’m off to read your other posts. Lots of hugs to you and Al. You are doing good for him.


    • I don’t think Al could make it in Assisted Living. He can’t do very much on his own and you have to be responsible for your meds and he is not. how would i get in contact with a county social worker


      • Hard to say exactly, since each place is set up a little differently. But I have found something called Dept of Aging, or Dept of Social Services, in a few counties in the past. Even the local hospital here has a social work liaison. does your church have a social work outreach office? It must be so hard to try to organize all this info and take care of Al at the same time. ( because it seems like he is in the SNF but you are still having to be responsible for his care).
        Hugs 2 u


  3. Terry,

    I just read your post, and my heart is pounding, and I’m fighting tears. I worked in a skilled nursing facility for 8 years, until this past September, when I had to leave due to health issues. What you are describing is unacceptable. I’m not sure what state you’re from, or what their laws are, but I would like to offer a few suggestions…

    1 – Check to see if your state has an ombudsman. An ombudsman is an official appointed to investigate individuals’ complaints against maladministration, esp. that of public authorities. An ombudsman can also advocate for you and your brother.

    2 – Schedule a care plan meeting with the Executive Director, the Director of Nursing, MDS Nurse, Activity Director, Physical Therapy and yourself. Make a written list of your concerns to distribute to each one present (I’m sure you probably already have one :)), and tell them your complaints and concerns, and that you want a copy of Al’s care plan, so that it can be updated at this meeting.

    3. Make sure that you tell them that you want a copy of Al’s current care plan to review prior to the meeting, so that you can see if it is being followed, and if it is not, make sure to include the specific areas that are not being followed on your list of concerns that you bring to the meeting with you.

    4. Tell them that you want to receive a written copy of the updated care plan when the meeting is complete, and that you want to schedule a follow-up meeting with them one month after the new care plan takes effect to see if the care plan is being followed and DOCUMENTED that it is being followed.

    5. Finally, tell them that if they do not adhere to Al’s care plan or if you have any more instances of his neglect, which is considered abuse, that you will be contacting your state’s Division of Long Term Care.

    My beloved sister, I pray that this will help you, and that Al will be well-taken care of. Please feel free to contact me if I can be of any assistance to you.

    Much love to you in Jesus’ name,


    • thank you so much Cheryl. I will do exactly all that you have written. I know of no care plan enforced. If there is I was never involved, but I will start on Monday following your suggestions. thank you so very very much my friend. God bless and a big hug from me


      • Praying with you as you go through these steps. It makes me cry too .. .just knowing the little I do and remembering this kind of attitude when our special needs daughter was in public school. The goal to be independent .. .for Al to walk .. .shouldn’t be the main goal for him now. Not because no one wants it for him, but because he isn’t physically able to do it. My heart and love and prayers are with you. and lots of long distance hugs.


  4. What you’re experiencing, unfortunately, is all too common of homes that are understaffed with nurses who are burnt out or entered the profession because their parents told them to. Unfortunately, these are symptoms of a system that does not work, and it pains me to hear how much you are going through. It’s not you, it is the system of indifference and being desensitized to the needs. I believe there is a better place for him, whether it be referral if you can ask around or a matter of waiting to see what is the next step through a list of pros and cons. Either situation of Al being at home or not, it’s taxing you emotionally. While obviously you can’t control everything that happens outside your home, you can certainly determine what the next best course of action would be for you and Al (as well as filing complaints as needed based on a code of ethics or conduct that such homes or professionals should adhere to?).

    I’m sure you will find the way that is easiest for you and Al. Just hang in there, and keep being creative in your solutions. I know you will find a way.




  5. Very important Terry..Cheryl has the right process down. It is exactly what I would have advised. It’s hard to do it but just take it one point at a time. What is the name of this Home? I ask only so I can research the Home although you may not feel comfortable letting me know. Any way BIG breath first. God Bless!


  6. There is not enough ‘individual’ care in homes….I think they are programmed to ‘push’ patients to keep walking,,,keep moving because that is what they are taught and instructed to do. They don’t seem to be able like you say to think in ‘gray’ only black and white.

    However having said that with Al’s deterioration you would not be able to cope at home with him. You know how hard it was before he went into care. His size alone is too much…

    I think as hard as it is on you …all you can do is keep on keeping on and try with each visit or problem that you notice…to bring it to their attention. If necessary ask for a meeting with nurses/doctors or whoever to discuss his particular issues and ask again to record it on his chart. Maybe you could even write the different issues yourself as to how you see them and find the ‘person in charge’ to give it to. ….making sure to keep to facts and not necessarily having an accusatory tone…

    Being a relative and advocate for the person in the home is very tiring and draining. If there is anyone who can support you in this such as your son ?? lean on them…If not your son then a friend …Just some thoughts Terry..Diane


    • I sure wish I had someone to lean on. My children don’t even ask how he is doing, it is sad, some day they will want someone to care about them. I think i m going to request a care plan meeting with this place first off, then like u said keep a watchful eye


  7. Oh Terry, I don’t blame you for crying. And. like you and everyone else, I have no magic answer. I do know, however, that you can’t let the turkeys get you down. You have to keep advocating for him, and appreciate that you are right. Not only are you his sister, know him well, and are a sensitive person, you are in addition a professional who knows how this should be handled. Just make sure you know all that when you talk to them.

    I’m also wondering how aware his doctor is of the treatment he’s getting. If he has any power over the institution, he can use it to make his directions clear. I would imagine you know that the MD still carries a lot of weight.


    • I shouldn’t say it because doctors are professionals, but he is only involved, it seems, when the nurses fax over for medications. I will keep this in my mind when the meeting occurs, that I have now been on both sides riding the fence lines as Al’s sister and a professional for 23 years. thank you Mona!


  8. I don’t know how I feel about this. This is so disgusting to me. I don’t want to say anything because it may upset you all over again, but they are supposed to be in that profession to help. Care, compassion, consideration. Is that so hard to do these days? Anyone with a heart can take some time to remember how it feels to get a sprain or hit a joint and have to deal with that ache for days, with a little extra effort can’t those people imagine what it must be like to have deal with similar pain all day, that does not go away even with painkillers? Uff! I wish I could do something to help you Terry. I’ve seen the suggestions Cheryl has made and I do hope that there is some way that you can get them done. No matter what the policies are in that nursing home, there is just no way that their manner of handling things is justifiable. Perhaps you can also consider making videos to go along with specific complaints, because this can turn into a “he said/she said” sort of affair very easily.

    Most importantly, please try not to feel guilty about any of this Terry. I know that you wanted to keep Al at home with you, but it is not feasible anymore. Both his and your state of mind were suffering, and it was also beginning to tell on your physical health. Things could have been worse if you had gotten ill and were unable to be his advocate and guardian, and I thank God that nothing of the sort has happened. In the few weeks that we had gran at home with us as her health failed, I saw what it did to my family, and there was a whole lot more than one of us caring for her when the health aid nurse wasn’t around. I can only attempt to imagine what it must have been like for you. So let go of any guilt and hold those accountable who are supposed to be making this easier for him and for you. Take care Terry, I love you. <3<3<3


    • oh my gosh Kadeen, You are so brilliant! making a video!!!!!! I can do that. I have decided that Monday morning I am going to stop or call and request a care plan meeting. Thanks for caring Kadeen and for the fantastic idea


  9. so glad you are doing the care plan meeting. you may also want to check into another nursing home. it is good to know what your options are. any care home can have him changed to medicaid. try to keep in mind how difficult things were for you both when he was home. yes you love him and want the best for him. your heart leads you and they are guided by different set of rules. my mother had polio and used crutches her whole life. after having heart surgery i was in her room when someone from physical therapy came in to room and said “we are going to go for a walk now” i sat as she tried to explain she couldn’t walk and the therapist kept saying “sure you can” after a bit i said “unless you are christ come to heal her she is not going to walk.” this was after several meetings with nursing staff. it was frustrating but they meant well. the nursing staff was young and had no experience with polio. maybe that is the problem here. i am just hoping this can all be rectified with better communication.


    • I am sorry about your mom.
      the thing with Parkinson’s it is different for each person. Some follow all the symptoms others do not. the progression is not the same for all. With Al’s mental thinking problem, i see this as a big barrier between the facility and Al. He can’t think quick enough, and they accept his answers too quickly. Al has had so much therapy since before October. When it was ended, these same girls who worked in therapy where Al is, said it was over. there was nothing else that could be done. once he got into the facility, it was decided that he could do more. so they pushed and pushed until now Al is in so much pain he can barely walk. i have seen big changes in these past two months in his weakness. in my opinion part is due to the over agressive of therapy, part is the Parkinson’s. The emotions run so high with PD, I have to be real careful whether Al is being emotional or is in real pain. It is hard but we all need to work together. this crap of black or white ideas just don’t cut it in the real word of PD


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