topic Re: To Jules5280 in Community Chat

To Jules5280

gidgetgh — Sun, 30 Mar 2014 16:56:31 GMT

Just checking this morning to see how your dad (and you) is doing.

Re: To Jules5280

NoelSeven — Sun, 30 Mar 2014 19:32:03 GMT

Yes, how are you Jules? You haven't been posting much lately... I hope you and your father are doing well.

Re: To Jules5280

croemer — Sun, 30 Mar 2014 19:33:05 GMT

Hope Dad is doing better Jules?

Re: To Jules5280

JustJules — Sun, 30 Mar 2014 20:07:46 GMT

Hi Gidget, just saw your post. Thank you for asking, I wish I could say good for both of us, but I can't. I stopped posting updates because sometimes it's just too much to talk about. I have never experienced such a messed up and crazy process in my life. My dad was discharged from the hospital after 11 days, and went into this skilled nursing "care" facility 3 weeks ago today. The goal was that he would get physical therapy Monday thru Friday so he could regain his mobility, get stronger and come home. None of that is happening...in fact I worry more about him being in there than being in the hospital. He was admitted as a High Fall Risk because he was too weak to stand or walk on his own, yet on the very 2nd night there they allowed him to fall out of bed. They didn't have a motion alarm on his bed, or a fall mat hear his bed, and they were supposed to do 15 min checks on him, but it didn't happen. I had a bad suspicion from that point on that things might get worse, but I had hopes for better. He has fallen out of bed multiple times since then, yet nobody can explain to me why since he has a bed alarm, a fall mat, and is supposed to be checked on frequently. After witnessing lots of the activities there I know what happens... when his alarm does go off (when they remember to set it or I do it) they ignore it. Multiple alarms are always going off in there, call help buttons are pushed, and they just get around to it with no urgency. Meanwhile I have witnessed nurses standing at the main station desk carrying on personal conversations, and one was even too busy texting on her phone to look up while I stood in front of her for almost a minute. They are understaffed, and although thankfully there are some excellent nurses there who actually are professional and take their job seriously, I have seen too many that seem to hate their work and take it out on the patients/residents. For all their talk of "care" and their promises, it leaves much to be desired. In my research, and also talking to some of the quality nurses that work there, I have found that sadly this is one of the better facilities in town. Our options are limited, there are only a handful of skilled care facilities, half of them had no room available, and apparently a couple others are even worse than this one. It should not be allowed.

I try to change the times I visit him so it doesn't get too predictable, and I'm rarely happy with what I find. Most days he is very confused and disoriented, to the point of having hallucinations. He is barely eating, has lost 11 pounds in the past 2 weeks, which is extremely dangerous for him...thankfully because he had a good appetite before he got sick, and has always loved his cakes and sweets, he had a few pounds as a buffer, but he is practically skin and bones now. His doctor is extremely concerned and has tried to explain to my dad how critical it is that he eats before he gets so sick they can't help him. The nurses get fed up trying to get him to eat, he says he doesn't want something and they take it away without trying to get him to eat. I understand they have other patients, but part of the doctor's orders for him are to see that he gets some calories each day, and sometimes that means being firm with him, not just letting him have his way. I try to be there for his meals, but short of living there 24/7 I just can't do it all. His insurance company is paying for them to care for him, not for me to live there and do it myself.... I could bring him home and do that. I wish I could bring him home, I know it would be better for him in lots of ways, at least he wouldn't be neglected, but unfortunately he is still too weak to walk on his own. Keep in mind, this is after 3 weeks, and the goal was to get him stronger and walking. Technically I should have brought him home yesterday, his particular insurance stops paying for coverage, but I'll worry about that obligation later. I agreed to let him stay one more week for continued therapy, but then came to find out that some of his therapy sessions have been "cut short" because he complains of being tired. The times I have been there he does his therapy, but I didn't want to be overbearing so I thought it best to let them manage that with him. I actually had the therapist tell me I was enabling him, so I stopped attending. I thought they would actually work with him since that is why he is there, not listen to a grumpy old man that is confused and out of sorts because they aren't giving him proper care. So, in a nutshell, it seems most of his time there has been wasted, and he has gotten worse, not better. It is their job to "encourage" him to do his therapy, not let him go waste away in a chair zoned out in front of a tv all day like a zombie. He eats a little when I bring him food or at least I can get him to eat more than they do, but his stomach is not used to much food anymore, so it's a challenge.

Last night was the last straw for me. I have known he has fallen a few more times than they have informed me. They know they are supposed to call me anytime of day or night, Our home is only about a mile away and I could be there in a moment, and so far I've been blessed that he has not taken any bad falls or broken anything, because in his weak condition it's possible and that would be the end of it all. I was with him last evening, he was very tired and irritable but not terribly confused. He ate a little food, and I tried to keep him up so he would sleep through the night, but around 9pm he was ready for bed. There have been times I have had to put him to bed by myself (which isn't easy) because even though I asked for help, after 15 or 20 minutes he got impatient and they were all too busy. Last night I needed help because he had no energy. As we were undressing him to put his pj's on, I noticed a lot of blood stains in his pants. Upon closer inspection, his underwear (depends) were bloody as well. I knew exactly what had happened because I have seen how some of the nursing staff handles him and is careless. My dad has a permanent catheter, and they insist on strapping the bag under his wheelchair, which is fine as long as someone actually does their job and cares enough to pay attention. They are so used to grabbing a patient, pulling them out of their wheelchair and putting them somewhere, that they often forget to look. I have had to remind several of them.... so what happened is someone moved him without checking, and pulled his catheter. Can you begin to imagine how painful that must have been for him? I'm sure he made it known... and all that blood??? Yet nobody said anything, and don't tell me they didn't notice. If we hadn't changed him into pj's last night, I might have never known about it. Thankfully the two nurses that were helping me are some of the professional ones, and they called the head nurse. They properly cleaned him up, but I told them that is borderline abuse and I am going to report it. I have no way of knowing who was responsible, but that is completely unacceptable to me, and on top of everything else, it's no wonder he isn't getting better. Once he was in bed, I came home, got my pillow and some toiletries, and went back there. I slept on his fall mat next to his bed. I didn't get much sleep, but at least I felt better knowing I was there in case he needed anything. He slept through the night, and I was able to get some breakfast into him. I came home for a couple hours of real sleep, and to do some of his laundry, and will go back later this afternoon. I don't think it is unreasonable of me to expect that he gets compassionate and thoughtful care in a place that promises that is what they exist to do. He is a nearly 89 year old man, if I can get him well enough to see that birthday, and he is weak and fragile. I shouldn't have to worry and stress about him when he's out of my sight. I've even had some of the other long term residents tell me I am there more than any family they have seen, and some of the confused patients mistake me for nursing staff. There are just so many things wrong with that place, but when it comes to hurting my dad more than helping him, I have no tolerance. In the meantime, I am trying to sort out some kind of occasional in-home healthcare assistance, because I fully intend on bringing him home at the end of the week regardless. I know it will be hard work, but I will do all I can for him, and I don't think leaving him there any longer will benefit him. I also intend on sitting in for all his physical therapy so it's not wasted time.

I'm not sure I will ever get my dad back to the fun-loving guy he was before he got sick, but I refuse to let him rot and wither away. The sad thing is that he also lost his older sister a couple weeks ago while he has been in this madhouse, and he was not coherent enough to understand.

Apologies for the super long post, and I do appreciate your kindness of thinking of my dad and me. I guess I just needed to get it out there.... Aging and sickness is surely not for the weak of spirit. I completely empathize with families going through this, because while I wish my experience was an isolated case, I realize that sadly it is not. Healthcare should be better for the elderly.

Thanks again, and please keep my dad in your prayers.

Re: To Jules5280

JustJules — Sun, 30 Mar 2014 20:08:38 GMT

Hi Noel and Croemer... just saw your posts. Thank you for your thoughts... guess my essay says it all.

Re: To Jules5280

croemer — Sun, 30 Mar 2014 20:11:19 GMT

I hear ya Jules, I have experienced the same problems dealing with my mom...especially the no alarm on her bed and her taking several bad falls. Short staff...yep ,,,scary! Best to you both...keep a close watch on him...we have had to.

Re: To Jules5280

JustJules — Sun, 30 Mar 2014 20:20:55 GMT

On 3/30/2014 croemer said:
I hear ya Jules, I have experienced the same problems dealing with my mom...especially the no alarm on her bed and her taking several bad falls. Short staff...yep ,,,scary! Best to you both...keep a close watch on him...we have had to.

It's just not right huh Croemer? Short of moving in there with him, I have to pray and hope every moment he is out of my sight. I'll feel better when I can get him home, but I know that will bring lots of challenges. I will no longer be able to just leave him to go to the grocery store or run errands, will require someone to watch him. I wish I had more family support, but the family I have that cares are all hundreds of miles away. Even their emotional support helps, but sometimes I am just overwhelmed. I am just one person, yet I feel like I need to be a one woman army to deal with all of it.

Re: To Jules5280

BellaPaprika — Sun, 30 Mar 2014 20:25:54 GMT

Jules, my heart goes out to you and your Dad. Sadly, the conditions you describe are not the exception.

I am employed in the health field. Without going into great detail, several years ago I had an elderly relative who was hospitalized and he too was told he needed to go to an extended care facility for therapy due to his general weakness, some confusion and unsteadiness when he walked. Having medical knowledge I knew that much of this was due to the post-op pain medication he was taking and the lack of regular activity for 4 days. I insisted on taking him home. I really think they thought I was insane but since I am in the medical field they didn't fight me on it. His case manager was clearly annoyed. The first few days were hellish but I had another family member to assist me. We had him sleep on the floor with padding to avoid falls, we patiently corrected him when he made no sense and I found that his pain was relieved just fine with Tylenol so the narcotics were not used. I made his favorite foods and made sure he ate them. I also made sure he drank plenty of water and juices as a big cause of confusion in the elderly is dehydration. We walked with him when he needed to get up and at night I slept in a chair next to where he was on the floor so I would be wakened by his getting up.

A week later he was still weak but able to get about the house pretty well and he was much less confused. Two weeks later he was his old self and to this day he thanks me for not letting him be sent to the nursing facility. We both know that he would have gone the route of your poor father. I have all the empathy in the world for people like yourself who have no one at home to help them.We have seen it happen to others. It's not that the facility staff don't care. It's just the way the system is run and the reality of the situation.

Re: To Jules5280

croemer — Sun, 30 Mar 2014 20:27:40 GMT

I understand Jules. I have a sister and we both work together most of the time...we feel the stress at times with each other and can snap from time to time,,,but we are two and it is better then one. You are a very good daughter to keep such a good eye on your Dad. You are doing your best and it is all you can do. Beating yourself up will not help... you can not be with him 24/7 he has lived a good life...you have done much and the rest is in God's hands.

Re: To Jules5280

croemer — Sun, 30 Mar 2014 20:29:25 GMT

On 3/30/2014 BlueCollarBabe said:
Jules, my heart goes out to you and your Dad. Sadly, the conditions you describe are not the exception.

I am employed in the health field. Without going into great detail, several years ago I had an elderly relative who was hospitalized and he too was told he needed to go to an extended care facility for therapy due to his general weakness, some confusion and unsteadiness when he walked. Having medical knowledge I knew that much of this was due to the post-op pain medication he was taking and the lack of regular activity for 4 days. I insisted on taking him home. I really think they thought I was insane but since I am in the medical field they didn't fight me on it. His case manager was clearly annoyed. The first few days were hellish but I had another family member to assist me. We had him sleep on the floor with padding to avoid falls, we patiently corrected him when he made no sense and I found that his pain was relieved just fine with Tylenol so the narcotics were not used. I made his favorite foods and made sure he ate them. I also made sure he drank plenty of water and juices as a big cause of confusion in the elderly is dehydration. We walked with him when he needed to get up and at night I slept in a chair next to where he was on the floor so I would be wakened by his getting up.

A week later he was still weak but able to get about the house pretty well and he was much less confused. Two weeks later he was his old self and to this day he thanks me for not letting him be sent to the nursing facility. We both know that he would have gone the route of your poor father. I have all the empathy in the world for people like yourself who have no one at home to help them.We have seen it happen to others. It's not that the facility staff don't care. It's just the way the system is run and the reality of the situation.

Wow you are very special Blue...truly!

Re: To Jules5280

NoelSeven — Sun, 30 Mar 2014 20:29:49 GMT

Oh, Jules, that's so awful for your father. It's heartbreaking to read of all he's had to deal with.

The stress on you is tremendous, I know.

I'm so sorry... know that many of us are thinking of you and praying for your dad's recovery.

Re: To Jules5280

BellaPaprika — Sun, 30 Mar 2014 20:34:01 GMT

On 3/30/2014 croemer said:
On 3/30/2014 BlueCollarBabe said:
Jules, my heart goes out to you and your Dad. Sadly, the conditions you describe are not the exception.

I am employed in the health field. Without going into great detail, several years ago I had an elderly relative who was hospitalized and he too was told he needed to go to an extended care facility for therapy due to his general weakness, some confusion and unsteadiness when he walked. Having medical knowledge I knew that much of this was due to the post-op pain medication he was taking and the lack of regular activity for 4 days. I insisted on taking him home. I really think they thought I was insane but since I am in the medical field they didn't fight me on it. His case manager was clearly annoyed. The first few days were hellish but I had another family member to assist me. We had him sleep on the floor with padding to avoid falls, we patiently corrected him when he made no sense and I found that his pain was relieved just fine with Tylenol so the narcotics were not used. I made his favorite foods and made sure he ate them. I also made sure he drank plenty of water and juices as a big cause of confusion in the elderly is dehydration. We walked with him when he needed to get up and at night I slept in a chair next to where he was on the floor so I would be wakened by his getting up.

A week later he was still weak but able to get about the house pretty well and he was much less confused. Two weeks later he was his old self and to this day he thanks me for not letting him be sent to the nursing facility. We both know that he would have gone the route of your poor father. I have all the empathy in the world for people like yourself who have no one at home to help them.We have seen it happen to others. It's not that the facility staff don't care. It's just the way the system is run and the reality of the situation.

Wow you are very special Blue...truly!

Thank you,croemer. I think it was one of those situations where you do what your heart tells you that you must and having medical knowledge and someone to help me was huge. Otherwise even with the best of intentions I'm not sure it would have been possible.

Re: To Jules5280

qualitygal — Sun, 30 Mar 2014 20:35:57 GMT

Jules, you and your dad will be in my thoughts and prayers too. This is not an easy time at all! There is a canned drink you can get for your dad (try straws to help him drink) to help with his electrolytes. I think once you get him home your care for him will be better as far as building him up. If it's at all possible, get some help in for both of you. You'll need some breaks while helping him. I do hope you look into someone coming in to help you two out ASAP. Esp. to help him with cleaning and bathroom. I'm sorry your experience where he's at is so bad. It's a bad situation. I could say I understand all they have to do, but I know when it's for our loved ones, it could come off as an excuse and I don't want to do that. You know what's going on. I thank God that my dad is being taken such good care of now, I physically was unable to any longer. Broke my heart, but I had to be sensible. I sure will be thinking of you, I know it's tough right now. Do your best to hang in there. God be with you both.

Re: To Jules5280

kittykatkay — Sun, 30 Mar 2014 20:38:00 GMT

JULES.....((HUGS)) and I'm so sorry for your dad and what he is going through, along with your suffering as well.

I was able to take care of my mom because I had retired early and also took some CNA courses before my actual retirement. I had moved her in with me even though she was in good health, but a couple of years before her passing, she was getting to the point where I had to do more things for her. If it wasn't for the Lord giving me the strength to take care of her, and the early retirement, my sister and I (sadly) would have had to place her in a nursing home. But, I was blessed and retired early and got to take care of her. Even though I was really tired those last two years (physical & mentally alot of times), I remembered to take things one day at a time and looked to the Lord for strength. I would do it all again if I had to....my mother was NOT going into a nursing home. I know others have had no choice, but I was blessed and able to care for her. So, I know what you're saying and what you and your Dad have been through in the nursing facility. It's sad, but it happens.

I guess what I want to say is that we never know when the Good Lord above will be ready to take us home, but he will give you the strength (physical & mental) to take care of your dad. Look into home-health assistance for not only help with your Dad, but also for you to take some time for yourself also. That's important...to take some time for yourself.

I wish you the best and if you ever want to talk here, please start a thread and we all will come running. Remember the Good Lord will be with you.....talk to him and he'll guide you; your family & friends will be there for you (I'm sure); and we also will be here for you.

Take care & please keep us updated.....even if it's just to let us know how your day is going, okay? ((HUGS)).

Re: To Jules5280

BellaPaprika — Sun, 30 Mar 2014 20:39:32 GMT

((((Jules and kittykatkay))))

Re: To Jules5280

kittykatkay — Sun, 30 Mar 2014 20:42:30 GMT

On 3/30/2014 BlueCollarBabe said:
((((Jules and kittykatkay))))

Blue....Suga...it was HARD some days (my sister was still working and I had little help)...very little help. But I knew My Lord & Savior would give me the strength and honey child, my MOM was NOT going into a nursing home if it took every breathe left in my body to take care of her. I'd do it all again, just to see her sweet beautiful face.

Re: To Jules5280

Deb1010again — Sun, 30 Mar 2014 20:44:44 GMT

(((Jules))), I had no idea what you were going thru. I hung on every word of your post and I must say I am praying for your (((Dad))). You are truly an army of one and are doing a spectacular job and so devoted to your dear Dad. I'm sure he appreciates it.

I also read BlueCollarBabe's post and feel that with the proper attention hopefully your Dad can be restored to his previous condition. I think getting home health is a good idea.

In the meantime, please keep us updated as you can. Please know there are many here who care so much about you and your dad...we are "here" for you as much as we can be. I'm sure many more have read your post and said silent prayers even if they didn't post.

Re: To Jules5280

JustJules — Sun, 30 Mar 2014 20:50:48 GMT

On 3/30/2014 BlueCollarBabe said:
On 3/30/2014 croemer said:
On 3/30/2014 BlueCollarBabe said:
Jules, my heart goes out to you and your Dad. Sadly, the conditions you describe are not the exception.

I am employed in the health field. Without going into great detail, several years ago I had an elderly relative who was hospitalized and he too was told he needed to go to an extended care facility for therapy due to his general weakness, some confusion and unsteadiness when he walked. Having medical knowledge I knew that much of this was due to the post-op pain medication he was taking and the lack of regular activity for 4 days. I insisted on taking him home. I really think they thought I was insane but since I am in the medical field they didn't fight me on it. His case manager was clearly annoyed. The first few days were hellish but I had another family member to assist me. We had him sleep on the floor with padding to avoid falls, we patiently corrected him when he made no sense and I found that his pain was relieved just fine with Tylenol so the narcotics were not used. I made his favorite foods and made sure he ate them. I also made sure he drank plenty of water and juices as a big cause of confusion in the elderly is dehydration. We walked with him when he needed to get up and at night I slept in a chair next to where he was on the floor so I would be wakened by his getting up.

A week later he was still weak but able to get about the house pretty well and he was much less confused. Two weeks later he was his old self and to this day he thanks me for not letting him be sent to the nursing facility. We both know that he would have gone the route of your poor father. I have all the empathy in the world for people like yourself who have no one at home to help them.We have seen it happen to others. It's not that the facility staff don't care. It's just the way the system is run and the reality of the situation.

Wow you are very special Blue...truly!

Thank you,croemer. I think it was one of those situations where you do what your heart tells you that you must and having medical knowledge and someone to help me was huge. Otherwise even with the best of intentions I'm not sure it would have been possible.

Croemer is right Blue, you are truly very special!!! I sure wish my dad's situation was the exception but I know that would be naive. I also appreciate your thoughts, considering you have experience in the healthcare field. I don't expect my dad to get individual, around the clock care like private nursing, and if I could afford that of course that would be what I would do for both of us. There are days I wonder if I can keep my sanity with all the stress, but then I remind myself that he is my priority, and I won't have him forever. He has lived a good long life, but he is a wonderful man who provided and always cared more for others, and he deserves better, so I owe it to him.

I think you are totally correct, and I need to trust my gut instincts. Much of his confusion was initially caused by certain meds... he was on painkillers and antibiotics, but now he is just back to his Aricept and Parkinson's meds. He has never had confusion this bad, but his brain is starving so of course it isn't going to think clearly. I certainly know my dad better than any of those people (they don't know what he was like before and have nothing to use as a comparison) and while it will be extremely difficult to bring him home when he isn't completely mobile, I know I can dig deep and manage. I asked his doctor that has known my dad for years, he had a follow-up last Tuesday... so I asked him to be brutally honest with me, if he thought I could manage dad at home on my own, since he is fully aware of our situation. He looked me dead in the eye and told me "I think it will be close" so close is good enough for me. My dad is tough stuff and he built me strong, I can figure out close. I'll have to change the routine, get some help, it will be a new ballgame, but like you said... I think back in his own environment, with his own smells, and comforts and his own tv that he can watch whatever he wants when he wants, and I can cook for him... it will be slow, but I think we can do this. What was that old story about the turtle and the hare? Slow and steady wins the race? I'll figure out a way to make it work, because the alternative is not acceptable to me.

Thank you for your input, and good thoughts.

*typos*

Re: To Jules5280

esmerelda — Sun, 30 Mar 2014 20:54:09 GMT

Cooking at home for him and being there for his meals might go a long way.

Also, are you there to see what kind of therapy he's getting?

Re: To Jules5280

Mama Mia — Sun, 30 Mar 2014 20:55:21 GMT

Jules, I read your entire post and my heart is breaking for you and your Dad. We went through much of the same with my FIL but one time when DH was there trying to get him to eat, some little trainee reported it as abuse to the state or county, whatever it was. We had to go to them in person and explain and if it wasn't for one girl who witnessed it, and told the state what really happened, we would have been in trouble.

We moved him in a few days and we had an Ombudsman for the Elderly come out during the whole move, so no one else could accuse us of anything. He liked it there, but after about a month Sadly, he did fall out of bed, broke his hip, and died at the hospital.

So be careful, you never know. Bring him home now, it isn't worth it having him there. You can get some kind of homehealth care I know. Talk to your doctor, he will know, also can get medical type equipment through Medicare, I.E. shower chair, hospital bed, walker etc.

I would also report them to the state for not providing proper care.

You are such an amazing daughter, your strength and love is unbelievable, and you both will get through this. You have done all you can do and I'm sorry you have no one to help you.

It is obvious so many here also are sending good thoughts and prayers for you both. God bless you both.