My husband, a sweet-tempered man all his life, became very aggressive toward me when I needed to clean him up. It ended up being the factor that made us decide to place him in a memory care unit five weeks ago. At first he was mildly combative when they gave him personal care, but he's gotten steadily worse about this. We have called in a geriatric specialist who has changed his meds and feels they will make a difference in a few weeks. There was suspicion of a UTI, but my husband happened to be put on an antibiotic for some swelling in his feet and ankles, so if that is the issue, it should be taken care of. A few days ago, he started behaving aggressively even when not having his clothes or diaper changed....not always, but sometimes a couple of times a day. The unit asked us to hire a sitter to watch over him for the safety of everyone involved....him, the staff, and the other residents....until the medication could start taking effect. We can't argue with that, but now I'm facing a $432 daily charge on top of the $4,400+ per month memory care and I can't handle that. I had to make special arrangements in order to pay for this At first they said "for a few days," but if this goes on more than 4-5 days, I can't do it. I'm thinking that I might have to bring him home and get some in-home care help. It kills me that we thought we had a workable solution and now I'm may not just back to GO, but even behind that. I guess I'm just whining, but this is the place where I feel that I can do that.
Joy, you've hit upon one of my pet peeves. We as spouses have to face the heart-wrenching decision to put our spouses in a facility and bear all the agonies that accompany that decision, but we do it primarily because we feel it is the right decision for our spouse. Then a facility that typically "boasts" and advertises their expertise in handling dementia patients begins to call us or demand we provide and pay for additional resources because they cannot handle our spouse's behaviors. I have a few suggestions.
First have a meeting with the director of nursing (DON), the head nurse on his ward, the facility doctor and if need be the director of the facility. Ask them for a report outlining specific incidents as to why they are requesting you hire additional help. Ask how they have handled these cases before when there was no family or resources (money) available to do that. Typically there is a medication that doesn't need "days" to work to calm him, like Ativan or Clonopin which the doctor can prescribe. The physician can prescribe those meds while Seroquel or another med is building up in the system.
Ask them what type of training the aides who care for your husband have had, how many years they have been at the facility. In many cases the aides have had little or no training in handling a person with dementia. You might even request to "observe" the care your husband is receiving with clothing, toileting, etc (usually in the am is best) so you can determine what type of aide you might need to hire. You will get to see first hand if he's being difficult because of his dementia or if it's due to the way they're handling him.
I must warn you, if you agree to hire a personal aide for a few days, expect that NONE of the facility aides will help your husband...they will automatically assume that the private aide will do their work. Also, how many hours are they talking about? In our case they told me that I had to hire 24 hour aides, that meant 12 hours for day, 12 hours for night. In our case the live-in aide that we have went every day for about 2 4 hour visits and the facility aides did NO PERSONAL CARE for my husband while the aide was there, even though the head nurse said that the aide could not perform any personal care because of liability.
I would find a way to force them to provide the care they promised you they would. BTW, take someone with you to take notes on what is said and committed to. Then send them a copy of what was agreed upon. These facilities are making a lot of money and they should provide the care they promised you.
At one time I thought I had about 4-6 months to find an ALF for my husband. It turned out to be less than 2 weeks. I was amazed, and not in a good way, how different "all inclusive" was from one place to another.
I wonder if an "ombudsman" agency could help?
BTW, I don't think you are whining at all. These are complicated, intense issues, to say nothing of emotionally and financially draining.
I would imagine if you cant pay for an outside aide to sit him, at some point if he was combative they could request with drs petition a stay at a gerispysche unit to iron out meds. I know several here have sent theirs to a facility for a stay to find out what meds work and don't. it takes time but usually they will eventually find ones or combos that give results. as with any facility they cant allow other residents or workers to be in harms way. i would powwow with the higher ups and get a game plan going and let them know you are unable to afford long term extra hired help. divvi
Thanks to all three of you....these are some concrete steps I can take immediately. Most of the aides at the facility are very good, but I have reservations about two on the day shift (when most of the incidents seem to have happened.) I was thinking of that last night, and your comments have solidified what I plan to do and say about that.
My experience with the ALF is that there is a great variation in the quality of aides. There is one aide whom I suspect is a source of trouble: she "tattles" on every behavior DH exhibits and was probably impatient or aggressive with him at one point. He was always a gentle and kind man and other aides have told me how good and polite he is. Sometimes it seems like she is saying "he did such and such and you need to stop that." So after several situations, I decided that from now on I am going to say something to the effect of, "This is a disease that exhibits these behaviors, so how are you problem solving this? Have you spoken to the other aides to find out how they deal with this? This unit is a dementia unit which is why he is here. What are your success stories with him - let's start from there."
My DH can be so sweet one minute and then become aggressive the next. I'm trying so hard to keep him home but each day brings it's own set of problems. I'm tired and even with in home help, I find my tears are only one heartbreak from the surface.
Carolyn, I know how very difficult it is, especially when they're combative and aggressive. Yes, each day is a new day with different challenges. I find that I get truly angry at DH when he's difficult. I think "what does he have to be difficult about? He is waited on hand and foot, gets everything he needs, doesn't have to worry about bills, there's always enough food, etc" Then I think, all that's true but he's lost any semblance of independence and privacy, has become incontinent and has lost most of his speech. I would be angry too.
This is such a cruel and heartbreaking disease. You are not alone. ((((HUGS))))
Marche, that is the vibe I'm getting from one of the aides at the facility. Most of the complaints about his aggressive behavior have come from her. I'm not saying it doesn't surface for others, but no one else seems to report as many instances as she does. She's not as warm with any of the residents as the other staff members. I've started asking her to explain to me in great details each of the scenarios she reports. In every instance, she has backed off as far as how severe it was.
Carolyn, you are where I was for most of the past year. One of the reasons I am praying that we can get him calmed down is that I was on the brink of my own breakdown....physical and mental....when I made the decision to place my husband in memory care. It was working out well at first in that other people were managing him during clean up and I was able to visit and laugh and talk about the squirrels, etc. Please don't feel guilty about making the move. I feel as though it might have saved my life. The grief and the stress wears you down in a way that is hard to explain to anyone who hasn't lived it.
Joy-I have temporarily put my e mail on my profile and will take it down shortly. Contact me if you would like to know how I handled a similar situation.
Joy I am with LFL in this being my number one pet peeve in facility care. Aides are not trained in the common sense world of caring for an ALZ patient. Behavior change in a short time span is a classic symptom of the disease and if the facilities are licensed to market themselves as An ALZ/Dementia they should be qualified to deal with the changes. After just over 3 year of DH being in a facility I have found that about half the aides are kind and caring and the others continue to try to reason with the patients. We all know that just leads to more frustration for our loved ones. As for management I think they are only focused on meeting minimum standards to retain their license because they know another poor soul will be on the waiting list to replace our loved one if we move them to another facility. I have found that when talking to the facility social worker and the DON with my concerns things improve for a very short time and then go downhill again. So frustrating! I just know that I can not bring him home and care for him because my physical, mental and emotional state had sunk way below rock bottom long before I placed him. With all the federal dollars supporting these facilities I think better standards for training should be mandatory.
Another thought on this subject. ALZ/Dementia is a disability. Why do the facilities not have to accommodate the behavior changes? I know that staff and others can not be put at risk if someone is excessive in their aggressiveness. INMO facilities should be forced to have designated lockdown rooms for medication adjustment for this disability rather than adding trauma to the patient by shipping them to another facilities where no one is familiar with them. All that is accomplished is med adjustment which could be done in locked rooms at the current facility while different meds are tried. I wish I was either rich, a lawyer or a rich lawyer so I could pursue why this disability does not have to be accommodated at a licensed facility that markets itself in dealing with only ALZ/Dementia care. But, wishful thinking, since all my extra dollars go to supplement the LTC insurance for care which is totally subpar. But dang it, the disease is a disability! Thanks for letting me rant. ((Hugs to all)).
When speaking with the DON or other administration, they should be reminded that the best advertising for their facilities comes from the families. People talk. Whenever the subject comes up in support groups, stitch groups, church, the gym, bridge games, and even when family members chat in the facility the talk invariably discusses the quality of care in various facilities.
The business of caring for residents and running a business is a balancing act. They can provide very good care and still make money. But we have to acknowledge that money is their bottom line and not charity. Our role in the equation is the money we spend to keep someone in their facility AND the word of mouth advertising from us.
Their choice is to make gobs of money by decreasing staff (short-term with the consequences of a bad name) or not make quite so much money and insist on adequate staff and training. The challenge is in figuring out which strategy the facility uses (ideally before placement).
I had a similar problem with the PSW's when Kevan first went to LTC. I searched the internet a found a great explanation for what the disease is and how to talk to and care for his particular Dementia combo. It also had cautions for to do's and not to do's. I sent it to the assistant director of care and asked that it be given to the staff on his floor ASAP. I also spoke up to stop a PSW from harsh teasing. We were in the cafeteria so it spread around the place pretty fast. I then asked for a meeting with the head nurse and his Dr. And in came the same PSW that I had spoken to about the teasing. I have had no more problems with his care since. They are, both Kevan and the staff comfortable together. It also helped them to deflect anything that will cause aggression. He still gives them a hard time but they now know what to do to help him get past this particular upset. In Ontario Canada we have a government agency that we can report abuse or inappropriate behaviour, lack of proper care and respectful treatment. They also handle reports of food and cleanliness problems. Each residence is rated by a number of criteria and Kevan's has been top one for three years. I didn't know about all if this until I attended a family council meeting a month after he went to live there. Family council can be a great advocate for the residents.
In the US each NH facility is rated by the government on several criteria as well, but it's mostly cleanliness, staff to patient ratio, etc. It doesn't really measure quality of care in my opinion which of course is harder to rate.
Each state has an omnbudsman you can contact to file any complaints about NH care.
Jazzy, could you share the link where you found the information that you gave to the facility director? I would find it helpful.
I goggled: bv frontotemporal and clicked on the university of Southern California and they had just done a study on bv fronto so that is the one. I'll try to find it and get it for you.
Marche, I especially like what you said, about how you're going to approach the staff with questions about how they are caring for the patient. Turn it around on them. As far as I know, they are being paid enough to know how to handle things like this (if I'm wrong on that account, I apologize).
Marche, I did diligent research before placement in Alf. After a 14 day hospital stay for dehydration he was discharged to hospice where he spent eleven days. He was given three or four weeks to live by four doctors. Hospice weaned him off all the drugs the hospital doctors gave him to put him in an unconscious state and he started walking and eating again. That was in September of 2012. On dismissal from hospice I also chose the NH (although he only receives ALF level care) where he is now, after research and recommendation by hospice. Both facilities are highly rated. My DH is fairly compliant with no major problems, although I do not like going to visit and finding him in soggy , poopy clothes and shoes. I just get madder than h*** when I see how some of the other ALZ patients are treated, especially ones with no family that visits. Since I live in a rural area all of the facilities are privately owned. Seven owner family members work in administration. I drive by the mansions they live in and see the Hummers, Cadillac Escapades, SUV's, and expensive boats parked at all. When he was at the ALF the owners had a $200000.00 (yep, that is two hundred thousand dollars) wedding for their employee daughter and then told the CNA's they would not be getting a raise for two years. This is supposed to be the best ALF in a four county area. The county and regional ombudsmen bring the staff donuts and pastries when they come for a complaint visit. I have friends working in these facilities so I do get first hand knowledge. They hate what goes on but they have to work. I could probably eliminate some of my frustration by not visiting so often, not caring about the other ALZ patients or moving him to a facility a lot further away and visiting only occasionally but I don't think "out of sight, out of mind" would work for me. I just do not think proper training is given to CNA's and it is not their fault. Once again, thanks for letting me rant. We will all muddle through this cruel disease somehow.
I have not been on the board for several days as we deal with my husband's problem at the memory care center. I am overwhelmed by how many of you have faced this same situation. I have been reading all the comments and will continue to follow up. Right now it is about 1:30 am. I was in bed, but could not sleep. I keep considering bringing him home again, but that had become a horrible situation. It's just that I think "What is he doing right now? Is anyone taking care of him?" and I want to jump into the car and drive over and check up.
Jazzy...I've been investigating the link you posted. I thought I was pretty well versed in Andy's situation, but that's a lot more info. Divvi....they mentioned the gerispysche unit to me. I hesitate because he's had so many changes and the place they have in mind is a two hour drive from here. Bluedaze...I checked your profile, but you had taken down your email. If you will post it again, I'll check daily. AliM....YES! I share your frustration.
I know exactly how you feel, Joy. I would love to bring him home but that would put me in my grave. It's really hard to just be the advocate. In your case it's not being sure if he is kept clean and attention paid to his other needs. I finally requested a meeting with his resident Doctor, his Doctor, head nurse and a caregiver. I told them of my concerns and let them know the things I was not happy with and how I expected him to be cared for. Maybe if you find him messy, instead of your cleaning him up get the head nurse and bring her to his room, show her what condition he is in and hand her the clean up material and let her know that you don't want to see him like thus again. Don't go to visit at the same time or day, don't tell them you are coming just walk in. I've read of another wife who travels two hours or more to visit her hubby because either the care is better or it is the closest. Would you be willing to move there for better care? These are all things you may need to examine rather then bring him home. Take care of your self my dear caring wife. You are very important. If you get sick or worse who will be there for him? It's kind of a catch twenty-two. Bring him home and maybe end up sick or worse or consider moving for a better residence for him. Lots of folks here know exactly how you feel and what you are going through. Be good to you.