My DH has been in a memory care unit now for a month and a half. I have been all over the place with what I expect for quality of care I should expect from the facility. It is hard for me to give up some control. I am trying to pick my battles. I feel like they are nitpicking my husbands behaviors compared to other residents. DH has been described as pliable and friendly. He is very easily redirected. But the care manager keeps bringing up things that I feel are more a staffing issue. Knowledge of the diease and training of the staff. I think that they do not like the fact that I will not use the facilities doctor. DH has had the same doctors for years. I am very happy with them. They know him and his history. His medicine has been very stable and tolerated. The psychiatrist at the facility said put him on the exelon patch. He was taken off of aricept 1 year ago Had been on it 8 years. His doctors do not see the benefit of exelon. I am also concerned it will bring on bad stomach issues. When aricept was increased it did. And the exelon patch is the same type of medicine. Why do people want to address every behavior that is not harming anyone with medicine. For instance he takes his shoes on and off. He messes with his belt. I don't care about these things. I mean he isn't taking his belt off or dropping his pants. He just fiddles with it. But if he doesn't have one on that bothers him. I am rambling. But it is more frustrating him being there. Stressful when he is home but frustrating with him there.

Jackiem29, I too went through what you are going through and had to move my husband to a facility that will accept his behaviors. It was a big learning lesson for me to find out how most NH work. The bottom line is they do not tolerate dementia patients who have behaviors very well. I was told by one NH who had a locked dementia unit that I would need to hire a caregiver 24/7 to sit with him because of his behaviors at my expense. Needless to say that would bankrupt me. I had his Exelon patch taken off about 6 months ago because he was always pulling it off and irritated his skin. After 7-8 years I do not believe that any of the memory medications really do much. You are absolutely right that they want to address behaviors with medicine. My husband had been in the Gero Psychic hospital going on 2 weeks for medication management. Doctor tells me he wants to make him more comfortable--meaning they want to stop the behaviors. The belt and shoe issue I would see as a non issue also. My husband was urinating inappropriately because he was ambulatory and I do understand that they cannot put up with that for too long. But some behaviors are very non issues. I know when I placed him in LTC I had a lot of trouble letting go of control but I have learned that I must or it will drive me crazy. He will be discharged on hospice so I have the comfort of knowing he will have a lot more care than he had without hospice. Placement of the loved one is a journey unto itself.

yhouniey, if your husband is not in a dementia specific facility or unit, I can see why you are having issues with them complaining about his behaviors. While we know that these behaviors are commonplace for our afflicted spouses, a standard nursing home won't be as comfortable with them - and they won't necessarily be trained to interact with dementia patients.

Well they discharged hubby today after 2 weeks in the hospital to nursing home on hospice. He had a bad night with development of a fever and was put on oxygen and they were using the section machine to suction his lungs but hospice told me they will only suction his mouth because it causes the patient discomfort is they go,too deep. I do believe we are getting to end but of course that remains to be seen.

AliM, thank you for your kind words. Day 2 of placement in the new facility. He is moving and eating and the fever is gone. He is still agitated as they did all they could do at the hospital regarding his medication adjustment and I was told this would pretty much be his baseline now. They are waiting for the new bed and broda chair to come from hospice. I am very happy with hospice as this is a different company from what he had before. He will get a nurse Visit twice a week plus an aid 3 times a week plus a social worker and chaplain. I would encourage anyone out there looking into hospice that you shop around. Although they have basically the same services and the entrance requirements are the same they can differ widely on how strict they are in accepting patients. The place where he is is half the size of where he was before. Everyone seems really nice and the STNA are seasoned veterans as opposed to people who are all young and inexperienced. The building is old but I am overlooking that because the care is what is important. It is very hard for my kids to see their father like this as he has declined so much in just a couple of weeks. When I go I basically sit and hold his hand as verbal communication is no longer possible. I try not to think too much and get emotional while I am there because I end up crying and it destroys the rest of the day for me. I am scheduled to take a short vacation in mid July. I hope I can go and that guilt does not raise its ugly head. It seems this caregiver role has consumed me in ways that I did not anticipate especially after I placed him. All any of us can do is take one day at a time and put one foot in front of the other. Thanks for listening

Dellmc53, I have found that the placement journey is very different than when I was care taking at home. In some ways I was able to have some of the pressure off once he was placed but since January he has moved 4 times and it was so hard on him as well as me. He is in a good place now. The hospice nurse called today and his one hand is swollen and they do,not know why. He was also running another fever. I asked the hospice nurse what is her best guess on his situation and she said that dementia is tricky. She had seen some patients who would decline and then plateau and continue this way for upwards of a year and she has seen people go,within weeks. I feel as if I have been sad for,such a long time so I am hoping that when he passes there will be some relief. I understand what you mean by being caught in quicksand. I guess as caregivers I know I sometimes feel I could have done more, I could have been more kind and understanding instead of frustrated so much of the time with him even knowing that the poor guy could not help it. My emotions at times literally took over and controlled me as I look back but I know I did the best I could. I do not think anyone ever comprehends what this disease does ultimately to the caregiver. That might be a good question for all of us to ask, how have I changed since dealing with this disease?

Fiona68, I will say something to the nurse. He is not on zyprexa but is on resperidone which is in the same drug family. He is on colace for the bowels and has no issues with urination as far as I know. I do appreciate your in put. Honestly with all the medications he has had while in the hospital it is a wonder they don't kill him instead of the disease. My husband was walking in the hospital but now has not been out of bed in 3 days and I feel that perhaps he has walked his last. Mine cannot feed himself anymore and they switched him to puréed food. They told me that as he weakens the agitation would stop because he would not have the strength anymore. Yes it certainly does feel like a physical weight. God bless

AliM. Thank you for your kind words. I have felt close to you as we have journeyed together. I too am still in shock as to now quickly he declined. You are so very right when you say we are consumed with emotional anguish after placement. In some ways it was worse than when he was at home but I know I could not have him here at home. Yes he is free and so am I. So now I begin yet another part of my journey in trying to begin a life for myself. Right now I am consumed with the funeral which is this Friday. There were many days especially right after placement and applying for Medicaid that I really did not know how I could go on. It was so very painful to have to place him. He had a lot of physical problems when he was diagnosed and he was a smoker. I do feel that issue did help to speed up,the decline. If one is physically robust and healthy coming into Alz it makes a difference. But that is just my opinion. If you ever want to chat more feel free to email me. I hope to remain a part of this website and hopefully can help others and learn from those who are further along on the widow road. God bless.

AliM, Thank you for your kind prayers. As I write this I am wondering how to get through the service on Friday. I am beginning to feel the grief--it is different than the grief of when he was placed. When he was placed I had a lot of worry along with the grief, but this feels just like a sad heart. I am hoping it will lift within a few months. I am moving slowly and not trying to attempt too much. Although I was a caregiver, I doubt one can call me expert as I had a lot of ups and downs with it, many, many frustrating moments. You will make it through. You too are very strong--much stronger than you think. In fact I dare say most of the people on this website are stronger than they give themselves credit for. I want very much to "return" to how I felt before all this started, but I realize having gone through this I am a different person--both inside and out, and for that very reason, cannot return to the person I used to be. I have yet to figure out who this new person is going to be. I am going to contact the grief person with Hospice. He told me to contact him after the funeral. I have that service available for 13 months free of charge. Might as well take advantage of it. Tomorrow I have to call Medicaid and tell them my husband was passed. I can only imagine what bureaucratic crap they will want me to go through.

I will,let you know. I got a letter stating that because he moved to a different county that I have to contact the new county to verify if he is eligible. I am calling my normal worker and see if I still have to call given that he has passed.

yhouniey please have an easy recovery.

yhouniey, Just be aware that since you are still recuperating, you are going to feel a little vulnerable. So protect yourself by not expecting too much of this first visit. Keep in mind that even if he doesn't recognize you this time, he'll probably get used to seeing you after more visits. Please let us know what happens.

Well, at least he didn't forget you. What's more, his resentment did not last long. I hope you are starting to feel better every day as you recover from your surgery.

yhouniey, Earlier, you wrote that Sonny was mostly nonverbal and could not talk or ask for anything. Well, now he appears to have found his voice - and with such eloquence! I hope he continues to be able to express his opinion.

Need some help. My DH has been in a memory care facility for 5 months now. We have put him on Seroquel two times a day and Ativan as needed. He is having problem with the other men in the facility. It seems to be at meal times and 3:00 shift change. We added the Seroquel because of hallucinations and paronoia. I visited for two hours before lunch. He was very happy and seemed quite calm. I got a call an hour after lunch and he was in a fight. Then they gave him the Ativan. Then an hour later at shift change he had another confrontation. He is late stage six beginning of stage 7. At lest that's what I go by on symptoms and where he has progressed. There are about 4 very active younger onset men in the facility. I do not know if it is my visiting or needs different meds or just that he is going into late stage symptoms. I am so tired. Placing him has caused me more stress. I cannot take a break even with him in the facility. I really just want to run away. I also noticed that it happens on weekends. They are short staffed. They have 24 residents in various stages of dementia and Alzheimer's.

Jackiem29, I can so relate to what you are experiencing. These medications are very tough to get a handle on. My husband's problem was agitation and not fighting however he would often get mean with staff. I know the last 2 weeks of his life he was in the geriatric hospital and they tried everything, they upped his seroquel, they did po and IM geodon as well as Ativan. The nurse told me that in the latter stages ofthe disease that medications can control some behaviors but not all. It is truly heartbreaking. I wanted to run away too. The stress of placing him was incredible as you are describing. Placing them does help or at least it did for me but it does create other issues for,the caregiver.

jackiem, I don't know how to fix this problem, but I suggest putting on your detective hat and work with the staff is trying to find out what is casing this and how to change it.
-- First, rule out a UTI (Has he been tested for one?)
-- Second, is there any chance he could be in pain?
-- Next, try to identify exactly what happens when these confrontations occur. E.g., Does another man approach him first or does he approach the other man? This may require you to observe him from the sidelines during the shift change. (This is not to place blame but to figure out what the interaction was.)
-- Also, try to identify the trigger. I don't mean who started it, but exactly what event exactly preceded the behavior. Did someone approach him or say something to him?

I'm not sure why you think your visits have something to do with this. It's more likely that it's his brain chemistry, or a physical problem or something in his immediate environment. Also, don't assume that the fact that the place is short-staffed is the cause of his behavior. However, it may be the reason why they have not yet figured out how to help him.

Good luck with this.

jackiem, It sounds like my husband’s disease is a little more advanced than yours. His unit also has 25 people but since it’s a state veteran’s home, they are all men. Sometimes some of the men start trying to annoy someone else and a fight starts. Maybe you could go there a few times during the shift change and instead of staying with your husband, sit back and observe. Your husband may feel threatened by these guys and is trying to defend himself. If that is the case, you need to talk to the unit nurse or if necessary, the director of nursing about helping your husband avoid these situations.

Don’t rule out pain just yet. My husband’s agitation was likely caused by pain and it happened at different times. Just double-check his feet, skin, and ears and watch to see if he favors one leg or something like that.

The bathroom thing bothers me. My husband is still continent but is too confused to use the bathroom on his own and gets agitated when he needs to use it. Each man in his unit is supposed be cued every two hours about using the bathroom and the staff is pretty good about doing that. Does your husband’s facility follow such a practice?

It’s possible that your husband is frustrated about not being able to eat or about the noisy environment. He may also be hungry – find out if he has lost weight. And insist that they accommodate his need for quiet. Some of the men in my husband’s unit eat on tray-tables in the day room and one eats in his bedroom. My husband is also losing his ability to use utensils and at breakfast he needs to be spoon fed. That is the staff’s job, not ours. However, I have started to make it a point to visit at his supper time a few days a week to help him with his meals.

As for your mother-in-law, I cannot voice my opinion without violating Joan’s rules about "appropriate message board behavior."

I completely understand why you are tired and worried. I was obsessed about the situation when my husband started throwing chairs last winter. Some of us are not cut out for this job and I am one of them. But I have to do it anyway. Hang in there.

Yea I think witH my DH, late stage, he doesn't have it enough to understand what is going on external from the facility. I never talk about anything I am doing or what is going on with the family. I could be wrong, buT I think DH has know idea what place he is in. I unfortunately took him to a behavior hospital today. He could be there for 3-10 days. I feel that it is the disease, but also the facility. But I also know there is no facility that is staffed right or truly understand alzheimers and dementia. Hopefully his med adjustment will help. Looking for other places for him. Not sure that will help him going through a move and a whole new staff learning who he is. I hate making decisions. I hate this disease. I hate feeling helpless.

I feel for you and your wife and your son. I remember taking my girls to college each year. My DH had just been diagnosed during the time. I missed him helping and being apart of it. So hard for our children too.

Alim I'm sorry you have to face this. The readmittance probably means some new contract terms with these people kicked in. There has to be documentation on what is optional and who makes those decisions. You don't need this but it sounds like these people bill for a living and you need to understand what you control.

One thing is look at the monthly charge before and after. The old charge apparently included all those things.

One piece of advise is win the war. Don't try and win every battle. I agree that these people are greedy. But trade off your own stress levels as you can.

Thanks Wolf and LFL, The aggravation built up when it took me two months to get the itemized list of summary charge listed on statement. Stress level exploded when I saw the $367.00 wheelchair charge. Wolf, your thought of winning the war and trading the battles for lower stress levels is a good one. I was only given a separate charge list for beauty shop, cable and telephone when he was readmitted with new company. Too many side shows with this eleven year ordeal for me! Thanks to both of you. It helps to have you wonderful friends that understand.

You ARE being strong. Crying for all of it only when it's safe.

Treating yourself fairly is a discipline Dee. This is an emotional roller coaster and it's going to sweep you all over the place. It was one of many steps for me to realize that I really was letting myself not worry about some things and really was trying to start focusing on me - which is our future so the more we learn the more we have one.

Don't underestimate the serious things the spouse goes through. I still have comforters around and I use them. Learning to be fair and even helpful to ourselves (especially under duress like this) is a skill that has to be aquired. All the best.

Myrtle is so right on about the toll everything related to Alzheimer's takes on us. Every time something new happened, from the initial memory loss to the rages to the poop patrol to the physical disability, to placement, I kept thinking that nothing could be worse than what was happening at that moment, but I was wrong. It kept getting worse. So, Ky caregiver, cry if you want to, eat the fattening food, don't worry about cleaning the house, and REST. You earned it, you deserve it, but most of all, you NEED it. Our bodies can take just so much stress, and then we collapse under the weight of it all. Do whatever you need to recharge your batteries.

joang*

I was planning to visit my husband after supper since there was a musical performance scheduled for the rec room at 6:30, but it got cold and very windy so I went in the late afternoon. There are usually two nurses on duty but today there was only one and she said this was her first time on this unit. She gave him his 4:30 meds (which do not include a tranquilizer) before supper. During supper he started to get anxious, and when we went back to the day room at 5:30, I told the nurse that he seemed unusually anxious and suggested she might watch him to see if he needed a PRN Ativan. She immediately responded, "Don't worry, this will calm him down," and held out a spoon already loaded with meds in applesauce. I told her that he does not get regular meds between 4:30 and 7:30 but she disagreed and said that he did - it was on his chart. She then poked the spoon at his mouth but missed by mistake and hit his lip instead, and said, "I'm sorry, Mr. Garvey." I told her that he was NOT Mr. Garvey! So she left and found Mr. Garvey. I wonder what was in that applesauce!

Myrtle, how did you handle that? Once with my husband there was a change in meds, and they gave him a double dose (meds at 4 p.m. and 8 p.m. all given at 4 p.m.) He was out until the next day. Fortunately it happened only once for us. Hope your husband was given the right meds by someone who knew what they were doing.