Thank you Ann for both of your replies, I will file a complaint...
Ann,
We are taking my father to the new home tomorrow. Does $5,000/month seem like a resonable amount to try to pay for a Alzheimer Care Unit? We are moving Dad to the special unit tomorrow and my mom and Great Aunt will live 4 miles down the road at an assisted living facility as of Friday of this week. I have been in Texas for 11 days and will return home to my husband and 3 kids on Saturday following a whirlwind 2 week stay attempting to get mom and dad back on track with their current circumstances.
Even though Dad has been suffering from AD for 10-12 years, mom still decided to move, build a new home, and have my great aunt move in with them. Mom is 73, dad is 74, and my great aunt is 90. Moving, living in their RV for 9 months while their home was being built, and taking on an elderly family member have all pushed my dad into a rapid decline. I saw him change overnight as the Risperadol was added the weekend of June 9th for aggression. It sedated him almost to a point of no return. The Parkinson-like symptoms came on so quickly, but since he was becoming increasingly abusive toward my mom, we asked for help and the Dr. prescribed the medicine hoping to help her feel safer in his presence.
Needless to say, Dad can no longer lift his head up off of his chest, he has tremors, and his appetite is almost nonexistent. It truly is a surreal, overwhelming, and unbelievable rapid decline. I flew to Texas to celebrate several family birthdays the weekend of May 2nd, and dad, although very forgetful and somewhat agitated, was still walking unassisted, could converse in small sentences, and was aware of his surroundings, and by Father's Day, he was practically gone.
I have made many notations in my personal journal mentioning the decline that mom mentioned to me daily over the phone, but the nursing-home situations, mom's failing heart, and all of these major life-changes have truly not had time to sink in. even as I sit and type this message.
Hearing back from you on both of my entries from last night were a such a comfort. I cannot bear to read other stories, tonight...but each night I know that I will be able to come to this site and read about the tragic behaviors that I thought only my father was experiencing and gain some sort of comfort and reassuarance that we are not the only family living this pain. So many of the entries I've read in the past few days on this website seem so common to our personal situation. I truly didn't know how this disease can create similiar changes in loved ones.
Pray for us tomorrow as we move dad again. He will be in a better place, I hope. It will be hard for him to change locations, I suppose. I really can't comprehend what it must be like for him to be trapped inside his mind. Do you really know if these AD patients understand their circumstances??
I am really changing topics alot, as my mind is confused and racing for both my mother and my father's sake. I feel convinced that I do not want any photographs of my father like this. He would really hate this life and this pain. I actually believe that he is angry and aware of how awful all of this is.
I will spend yet another day tomorrow jammed with tough decisions, and probably ones that I will ponder and second-guess for many years to come, but as I am in Texas for only a Saturday to Saturday two-week visit, I must make many decisions (and in turn many mistakes) trying to get my parents in a place that I can live with myself. As I return home to my husband and children, I hope that I have done all that I can possibly do for now to help both of them.
I am glad to hear that you were able to get both of your parents and your aunt squared away, and especially that you have found a place for your Dad. I believe that $5,000 a month is not an unusual rate for a quality home, so you are right in the market there, assuming the place is good.
It is very hard to tell what a person with Alzheimer's is thinking or feeling when the disease has reached the advanced stage -- but it is believed that higher, more sophisticated thought is already impossible at that point.
The anger or frustration that one sees is generally more related to immediate symptoms, such as the inability to button a button, or get out of a chair -- or even an imaginary problem -- rather than something as sophisticated as the issue of having the illness in the first place. That kind of consideration is generally long past by this point, because the centers of the brain that are capable of forming complex thought are no longer functioning properly. As for being aware of how awful it is, well, awareness is a relative condition. If I am uncomfortable because I cannot get out of my chair, then I am aware of being uncomfortable -- but does that mean I am aware that I have Alzheimer's disease and that this is the cause of my disability? Not necessarily, and in fact, probably not. Alzheimer's robs one of the ability to remember that he or she even has the condition.
You are doing whatever you can to be there for your parents, and doing your best is what counts -- ensuring they are cared for properly, by competent, caring people in a nice place, and coming to visit whenever you can.
Living at a distance is so hard! Being in touch by phone with your Dad's caregivers at the new home will be essential to maintaining some control over what's happening with him and will also give you a better sense of how he is doing, as well as your mother and aunt.
Thank you for your insight into what my dad may possibly be experiencing.
Dear Ann,
The words about my father's cognitive ability, or lack of, were comforting. I have so many questions regarding him and so little experience with this disease that what you had to say to me really helped and it also really reinforced what the neurologist said to my mother and myself today. The Dr. (at this new facility today) relayed to my mom that she needed to take a one or two week (guilt-free) break from dad. He said that dad needed to separate from his previous memories and adjust to his new life. He was also concerned about the number of times that he had been moved recently in conjuction with what he referred to as "brain damage". He understood that we were unhappy with his previous caregivers, but that with a little time, dad could restore "his own personal reputation with his family". I'm not exactly sure what that meant.
Dad really did seemed more like himself today. He was less responsive to me than he had ever been, though. Somehow, I feel that this is almost undignified for him. I seem to want to treat him like I treated my own children when they were very young and helpless. I am quick to hold his drink and straw, count aloud as we are trying to get him to stand up, and stroke his arm and hands alot,... etc. He seems to want a relationship like we had all of our lives (where he is the adult and I am the child). All of this may be my own false perception and my own sensitivity to other people's feelings...but it is rather unsettling.
I am most pleased knowing that his surroundings are brighter, cleaner and more like what I feel "he deserves", so maybe all of this moving and changing his environment was more to suit our own consciences about such a tragic family dilemma. In the end though, I will be more able to deal with this most harrowing two weeks of my life knowing that we did all that we could for him and for mom.
I do so appreciate your responses. I feel like typing to a real person and getting such a personal response is very therapuetic. This is a wonderful way to end a seven hour ordeal that was packed full of emotions and energy. Just know that your words and your advice have affected my life.
Sincerely,
Audrey
Glad you found my words helpful and even more pleased to hear your Dad is in such a nice place and that things worked out so well.
It is not surprising that you have an instinct to protect and care for your father as you did for your young children -- he is vulnerable and in need to your nurturing and help just as they were back then. It's a natural response.
Hi,
I am new to this web site and I am so glad I decided to join. I had my Dad living with me for a year and a half after my Mom passed. (My Dad has dementia and can't be left alone). I retired to devote my time to caring for him.
Six months ago after going thru two surgerys within a weeks time One being surgery for a broken hip his dementia got much worse. I had to make that "Big Decision" about puting him in a nursing home. Luckly there is one very close to my home that I had heard good things about. After a month or so I started noticing that simple yet necessary things were not being done for him. I gave them the beneifit of a doubt. Soon after things got much worse. I requested a meeting about his care (or lack of) with the Asst DON and a Social Worker. I voiced all my concerns, which were almost identical to what I have just read. I was told that my concerns were real and I was asked to put them in a letter and give copies to Administrators. Which I did gladly. Hopefully it will bring about some positive changes. ( No feed back yet). One question I have, how do you go about changing the way the ratio of patient to aid to nurse is decided? I was told that in the nursing home where my Dad is it's determined my census and not level of care of patients. This is not pratical. The aids are over worked, the nurses don't have time to look up even a simple question about my Dad's day in a reasonable amout of time. I visit my Dad every day sometimes twice a day and am very much involved in his care. It breaks my heart to see my Dad confined to a wheelchair and not being given the care he deserves. It makes me feel like I have to be there 24 7 to police his care. It is so inhumane.
Any suggestions would be greatly appreciated.
The issue of neglect in Nursing Homes is one that has captured headlines throughout the country, sometimes for good and sometimes not. More often, unfortunately, for not. It also keeps A LOT of people busy on the web, as you have already seen.
The social workers at your father's home have asked you to write that letter and start what's called a "paper trail" because they are as frustrated as you are, having seen first-hand what can be done, as opposed to what should be done, and need help getting it changed.
The paper trail gives them the ammunition to advocate for change. It's not just about census, although that is some of it, because funding for staff, and staffatient ratio is determined by census. The ratio itself, however, is determined by adequacy of care, which in turn is documented by that paper trail you have started, along with others in the same boat.
Another thing you can do to help -- aside from continuing to document, document and document EVERY SINGLE THING that goes wrong, immediately, is to go to the top of this page, click on LINKS and then on CAREGIVING, then COMPARING FACILITIES. There you will see links to a number of databases, including several where you can file a report on the quality of the one your father is in. Do that. It's important, and then send a letter to the State Department of Aging, the State Department of Health and Human Services and perhaps also the US Department of Health and Human Services.
That ought to get the ball rolling. Keep me posted; this is what social work is all about; advocacy!
Hi Ann and everyone....just stopped in to read posts and also say my prayers for all the daughters, friends and loved ones here.
My mom is slowing down with each day and her circulation and her skin is breaking down she is more silent than usual. I can feel her slipping at times and I have to just try to keep telling all of our family stories to her and try to keep a smile on my face and be strong.I am the responsibile child always have been. I keep working,cooking,being a good wife and daughter and mother...I sometimes just want to be her little girl and not have to go through this ALZ or nursing home anymore...I have never been one to show my feelings I have always been the strong one, I have to admit this is killing me on the inside. Tomorrow is going to be a better day. I will be going up and doing Moms hair with all colored bows and turning on Big Band Music for her and pretend we are dancing...only I will be doing all the footwork. She laughs alot and this is more memories for me. Thanks to all for listening.. Hospice is there about every day now.The morphine helps with Moms pain..she takes it every 4 hours with bosts inbetween. I will be back ...thanks to all,Sandra
Being the "responsible one" is the hardest job in the world -- it means being tough on yourself, more than anyone else, being there for everyone, sometimes more than for YOU. As you help your Mom get ready for the Big Move On, you are also preparing yourself to grasp the Baton she is passing over to you even now, while you're so busily fixing her hair and making those memories and hanging on to that smile.
We both know you won't have to do this much longer, and the struggle between the wanting it to end, and wanting her to stay, will end as well. With that will come a huge relief, and peace, and yes, pain in the loss of your childhood for good; that last vestige of hope that seems to burn eternal regardless of the reality that surrounds us.
Tomorrow will surely be a better day. With it will come complete adulthood, and the knowledge that you did absolutely everything right. Your love and caring and respect for your dear mother has been so true that it just shines forth on these boards. Believe me, she knows it somewhere there inside.
Though she is physically silent, you know spiritually she is free as the morphine allows her to rest while the disease runs its course. And the times she is able to share the moments with you, I am sure she rejoices.
You will be able to look back on these days of fortitude and smile someday.
Creative hairbabe,
I am so heartbroken to read your posts. It sounds as if that nursing home does not use pressure pads which are essential for bedridden patients. They will prevent bedsores and they are not expensive. Here's an example of what I mean: http://ucanhealth.com/goto.php?page=...sure_pads.html
At least it would keep your Mom's skin from breaking down. We use one for my Mom and it does a terrific job. I'm so sorry your Mom did not have better care. It is really a crime!
God bless, you will be in my prayers!
Just a quick note to address the issue of pressure pads...
They are a wonderful thing and a boon to anyone who has to be in bed for any major length of time. However, I want to let you know that at the end of the day, they do not ward off the pressure sores forever, folks.
At some point, pressure sores can and sometimes do appear anyway, despite the best efforts of nursing staff, family and doctors. Skin tends to break down toward the end of life, not always, but sometimes, and even with the best of care and the finest pressure pads, it is not always avoidable.
These products certainly DO help and they are a huge blessing, and make things a lot more comfortable. So do soft jersey sheets, for instance, and many other products. Ultimately, though, there are times when the outcome is just not in our hands...
Thank you O and Ann for the reply.....we have got Mom an air bed for her pressure points and anything else going on, she says that it is comfortable but I noticed that the bed gets warm from the warm air keeping the mattress afloat. Mom is in good spirits and having stomach pain quite often. My daughter and myself try to keep her pampered daily ...,..She is spoiled! I have to laugh because we were watching "Oklahoma"on the flat screen we got her and all of a sudden she started singing softly with the singer....we all joined in even the nurse! We all must take time to laugh....I have learned this in between the crying. Thankful so thankful for this site.
God Bless ...I will be back
Hi Creative,
It's good to know she is a little more comfortable. Do you have a pressure system with low air loss? I believe this can alleviate the warmth that is sometimes felt from the plastic of the pad. Here's an example.
See: http://www.bpimedicalsupply.com/mm5/...rce=googlebase
Hi O, Thank you so much, I am going to find out about this to keep my Mom alittle more comfortable. This is a great site to find all the extras for her as well.Bless You, Sandra
Thanks again for prayers, as always I will be back. I include all in my prayers. Thank the Heavens above for this site.
Hello to the group, and heartfelt best wishes to Sandra and Audrey B. You have both discovered the worst side of outside caregivers. But There are also very good alzheimers care facilities, I was lucky enough to find one for my father immediatly. The senior citizens center and council in his county of residence had put together a list of the better ones that I could research quickly. another very telling thing to ask the facility is about staff turnover, most professional caregivers will not stay long in an environment of Pt. neglect. The cost is always a major factor in facilities, my dads is > $4100.00 per month, but and I stress this it is a home that transitions into medicaid when his funds run out, and thus he will never have to move, they will do hospice there on site for there alzheimers residents. I do not know if there are senior services where either of you are, but they are usually up on the absolute best options for cars and were an invaluble not to mention free resource to me and my father. Hope this is helpful to any and all members looking for this and those who wonder if there is any good help out there. Best to all, MelissaJ.
hELLO, i just wanted to type a few words before i went to bed this evening about what happened this week. I had went for a short visit with my mom before my work day started. Mom smiled when I came into her room, she was still sleepy,Hospice hadn't come in yet. Mom looked like she was really swollen in her tummy this morning,so I had asked the aide how the night had gone...she said mom did not sleep well...so I asked the nurse(who was not a regular) to check in on my Mom... well it seems one aide thought another had emptied moms cath.. or so they thought (i found out later). The Nurse that checked on mom didn't know she had a cath in her (hello) checK the residents notes...anyway long story short Mom was filling up with her urine and her face was getting blotchy and she was very destended in her tummy. I called my daughter she came right away and checked everything from her toes up and found there was a kink in the cathater...got that out and wooosh came all that urine out. Thank goodness for my daughter.She said even the smallest kink in something can cause horrible results. Mom was much better in about 30 min or so. Just a few words ...be your Moms advocate and pray alot. Just wanted to share what is going on...Tomorrow is going to be better. God Bless...S
Your Mom is the luckiest person in the world to have you! It's an amazing thing how a small kink can have such potentially devastating results... but it does. Our bodies are truly miracles of creation, but much more fragile and complex than they appear at first glance.
I want to strongly advise you to write a letter (creating that paper trail again) to the director of your Mom's home about this incident, in order to document it and in order to prevent it from ever happening again. Send a copy of your letter to the state regulatory agency that oversees the home.
The best way to do that is with follow-up, follow-up and follow-up, especially with a paper trail, because documentation cannot be ignored and must be inserted in an employee's file. It also often shows up in state inspections as well.
It is important to remind these folks that even though everything is nice and friendly, you are still your Mom's advocate and won't tolerate neglect or complacency when it comes to her care -- and that you expect the administration to hold the staff to the same standard. This should not have happened; there is no excuse for a Caregiver not being aware that your Mom has a catheter.
Hello Ann and everyone,
It has been awhile since I have stopped by. We have been busy with my MoM and my husbands Dad.His Father is now terminal and next step is Hospice, same as my Mom.
Mom is slightly worse,but we are there every day.Hospice was in today and yesterday she was telling me Mom has one foot in this world and in the next.She is bringing me a few books about the stages people go though before death.. to read, since Mom has declined so much.The nursing home is doing well and we are always checking on things
too.
Ann, how can I get this sinking and just sick feeling that has come over me out? I had gone to my Dr. appt and he had said that an anti -depressant would help me. I am afraid of any meds because of what I found out and how how they affected my Mom. I am thinking that I can just keep positive thoughts and everything will be ok.At least this day and go from there.
I keep saying my prayers for Mom and everyone .It sure isn't easy for all the many families and their loved ones, all around this great country.Thanks again for your site..Blessings to all, Sandra
I am glad to hear that hospice is involved with your father-in-law and your mother both -- it is a terrific service and they are the most expert, kindest professionals in the world.
But explain to me something, please: what's the deal with the anti-depressant? What did this do to your mother, that you are now hesitant to avail yourself of this support, when you need it most?
Also, is the doctor recommending the same medication that your mother took?
I would also like to remind you that your biology is different than your mother's, just as one body is different from another is so many other ways -- we all like different foods, have different color preferences, and respond differently to different stimuli as well, including medications and other chemistry.
But this has more to do with past trauma, I think.... so tell me more -- that way, maybe I can help you with it. Is your mother resting comfortably, meanwhile? Is she in any pain?
I am thinking of you and glad you got in touch. Let me know,
Hi Ann, I believe that what my Mom went through with all kinds of drugs had made her much worse. She didn't know what she was doing or where she was at alot of the time.Once I had checked out what these drugs did and how they affected her mental state also how they affected her organs I had the head nurse take her off at least 8 meds.She started to eat again and know her surroundings. Mom seemed to come around a bit more/like her old self. I guess I have been scared of meds since then. I won't even take asprin. I believe that the Dr. was wanting to put me on an anti-depressant(low dose) because of what I have been thru and what is going on with Mom now.I'm just scared of meds. When my Father died, I did take an anti depressant and found that I couldn't even talk let alone do anything for myself or anyone else. In my mind...I have to be on top of everything for Mom, my business,Husband and his Father and my daughter.The Dr. told me that most people handling what I have for this many years are on some form of anti -depressants. He did say that I am under alot of duress.I just have to put everything into the Lords hands and pray alot more.Thanks again for this site and Blessings to all here. Sandra
Thank you Ann for both of your replies, I will file a complaint...
atient ratio is determined by census. The ratio itself, however, is determined by adequacy of care, which in turn is documented by that paper trail you have started, along with others in the same boat.
Alzheimers care costs
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