My husband is in a geripsych ward and when he's stable, will go to an ALF instead of coming home. So far, he was put on too much medication and had a fall; the next week, there was a tripping hazard and--you guessed it--he fell again.
I am learning that I must visit every day and examine his whole body. So far, I have found blisters on his feet that the staff had ignored; feet were not bathed for about a week; he isn't shaved each day, etc. The last time he stayed in this unit, he came home with a blister under his toenail that requred a podiatrist to remove the nail and a rash between his shoulder blades that was caused by the harsh soap they use.
This ward is associated with a hospital and is one of the few geripsych units in the area that does medication adjustments. I am starting to realize that the poor care is, sadly, pretty common in the field of dementia care facilities. I always knew family members who insisted on visiting each day, helping their LO's with meals, etc. My point for posting this is--it is clear to me that it isn't enough to take things at face value. Lift up and pull down all clothing, take off shoes and socks, etc. and take note of the condition of your LO. If you see a band-aid, bruise, etc., ask what happened. Also, I have been advised to keep a daily log in writing. Don't think because you are paying thousands of dollars a month for care that it will be done properly.
marilyn you are so right! I was the one who found pressure sores on my husband's heels because no one else looked. Just because a LO is placed doesn't mean our job is over.
Nora, that's my point. I think we may be lulled into a false sense of security, especially if we buy into the marketing, attractive environment, etc. And of course, normally if you are spending from $5,000 to $9,000 (in this area) a month, for any service, you expect a certain level of professionalism. Ain't necessarily so.
Would a patient get better care in a nuring facility?In PA. when their money is depleted the home would put them on Medicaid.I saw many patients in better condition than my DH at the facility I volunteered at for many years.
yhouniey--I think it varies from place to place. Remember, not all patients in a NH have dementia. Based on our experience with my Dad, who didn't have dementia--he got care because he could speak for himself. Dementia patients are helpless.
Marilyn, I agree. When DH was in the first geripsych unit 3 years ago now, they did nothing for him. He was unshaven, unshowered, in the same clothes and his bed was never made. I found out when I spoke to everyne in the chain of command, incl the CEO, that psych hospitals (at least this one) that the patient is expected to make their own beds if they are ambulatory and take care of all personal needs like showering, shaving, etc. Oh and they were responsible for putting their dirty clothes in a paper bag, writing their name on the bag and bringing it to the laundry room and then picking it up when it was done. I told them how can they expect that from a dementia patient? I was aslo advised that they would not force a patient to shower, shave etc. if they refused because they were worred about safety. Horrible experience and I went ever day they had visiting hours. I found out by accident that DH has a choking incident at lunch but no one, not even the head nurse on duty would talk to me about it. Finally one of the nurses read the file and spoke to me privately about the incident saying she wasn't on duty at the time but had read about the incident in his file.
When my husband was in a psych unit the only way I could tell the staff from the patients was to look at their shoes. The staff had laces in their shoes and belts in their pants.
I could write a novel on advocacy for your loved one in a nursing home. It is the hardest "job" I have ever had! At home the caregiving was extremely stressful because I was trying to do everything alone. As hard as it was, it was also much easier in many ways. I had control over how he was cared for. Once placed, that all changes. Now you must trust someone else to do their personal care. I don't trust easily and Lets face it, no one could give Lynn the quality of care that I can. They just do not care for him like I do.
An amazing thing happened when I had to place Lynn... I went from someone he seemingly hated, to once again being his wife and best friend. Where at home he fought me tooth and nail over trying to do his personal care, once there he only wanted me. It was the damnedest thing!! Now that I had hung up my nurses cap, and could be "just" his wife again, our whole relationship changed. As hard as it was to place him, and it WAS extremely hard!! I am forever grateful to get the gift of "My Lynn" back. It was absolutely a fantastic blessing to once again feel Lynn's love.
Lynn became more alert than he had been in years after being placed. There is a name for this phenomenon but I can't think of it at the moment. When something traumatic happens to them, it sometimes can trigger clearer memories. This is what happened to Lynn. He knew my name, he knew I was his wife, he expressed how greatly he loved me, he knew where he was, and he wanted to go home. It was HORRIBLE!!! But also such a blessing.
For the first few months he was there he would not let the aides or nurses help in his care at all. I went in to attend his personal care every day. The only way he would take a shower is if I went in the shower with him. He would have NEVER let me do these things at home. But in this new surroundings, I was his security blanket and he now welcomed my care. He was still very aggressive and I was concerned they wouldn't keep him. I wanted to take him home, but I knew once back in familiar surroundings he would once again refuse my care and the abuse would come back. As much as I missed him at home, having him "hate" me again was more than I could bear.
So for months and months we worked at slowly transitioning him to allow the aides to help in his care. It was a very tall male aide who was first able to get Lynn to shower without me. After that little by little they were able to take over his personal care. It took a good solid 6 months if not more. Now that is not the "norm"... but Lynn was a very difficult case and I was more than willing to help him in any way I could.
For over a year I didn't miss one day of visiting him. He needed me, and I needed to know he was ok. To this day I still try to go in every day. The fact is, it is their job to care for our loved ones, but they do not care for them as well as we do. I still feel the need to go in every day. If he doesn't eat, oh well, on to the next person. They do not have the time to sit with him like I do. And they just don't care if he doesn't eat. I DO!! His eating has been my biggest concern since he has been placed. My anguish is well documented here at Joan's.
Advocacy is a full time job. You have to be relentless and fierce. There is always something that could be improved. There is always something I am fighting for. Some major, some minor... But all important to me. Lynn can not speak for himself. He needs me to look out for him. I take my role as his advocate extremely seriously. It pains me greatly that I can not afford to hire around the clock care so I can have him home with me. I can't do that for him, but I CAN make sure he is getting the best care possible! Protecting Lynn has turned me into a warrior! Long gone is the shy girl who had trouble dealing with conflict.
I still laugh out loud when people tell me I should go on vacation. They have NO CLUE!! There is no way I could be away from Lynn for even a week. He needs me, and I NEED to know first-hand that he is being taken care of. So no, our job is not over once we place our loved ones.... our responsibilities just change.
Nora, I don't know if your comment was meant to be funny, but it gave me a big laugh! I needed it because I am very tired from visiting Steve every day at the psych unit. It's about a 45 min. drive each way, and he's been there 2 1/2 weeks. However, it is just as Nikki said above, he won't cooperate with the aides doing personal care. Yesterday, and aide and I dressed him and today, he refused his meds until I got there. Nikki, I am glad to see that Lynn finally made the transition to others doing his care, since I do plan to place Steve when he is discharged at his doctor's recommendation.
For any of you who have never been in a psych unit--it isn't pleasant. There is usually at least one other patient who is wound up and quite possibly, screaming at the top of their lungs. Hard to hear yourself think in that environment.
marilyninMD when Bill was in a psych unit it was almost two hours away. Visiting was only three days a week for only an hour. It was a mixed bag of patients and some of them were very loud. Bill decked a dementia patient and the staff's only response was-"don't worry about it-he won't remember". Not my favorite time. It was my daughter who noticed the shoe laces because I felt the staff was off the wall as well as the patients. Picture this-staff felt I could go on a planned trip with my family. There I am in the Atlanta aquarium on my cell phone trying to decide on tube feeding as Bill decided not to eat. Thinking back on all the family visits and trips I would have missed so I could visit with Bill. He had long forgotten who or what I am. I would have missed seeing my grandgirl grow up. This site is a catharsis for me. Reliving what was is difficult-but it gives me another chance to process what was going on. In the heat of the moment I was often reactive instead of proactive.
Nora, I'm sure you did the best you could. I would guess that most of us here have never taken care of a spouse with dementia before and were totally unprepared for this wild ride! Normal life just doesn't give you much to draw on when you are faced with the constant crisis mode of dementia care.
I'm wondering under what conditions your dh's were admitted to psych wards - were they violent? I'm also wondering at what point one should be asking for outside help or even consider placing a lo in ALF or anywhere else. What if they don't want to go, can you make him go? I can't imagine my husband being even a little cooperative about even a day stay at Respite Care. How do you initiate these events without full scale war going on in your home? At the moment I have our 2 daughters lined up so I can go on a 3-day event with some friends who are close to me and understand what stress my life has become; but, they don't make a trip like this easy for me, it's not convenient for their lives. So, I will (as soon as I think I can get hubby to cooperate) be checking into respite care or in-home caregivers. Any in-home person will have to be someone he will not be able to intimidate. Along with this disease has come alcohol abuse and aggressive behavior with it. I'm hoping that Seroquel or another drug of this kind will help me eliminate his need for alcohol.
Hi mothert, I am in Canada so perhaps things are different. Gord went into a psych unit to have his medications changed in a controlled environment. The staff were amazing. They came in with smiles on their faces and treated the patients with dignity and respect. All of the people in the unit ( other than staff) had some form of dementia. It took a long time before they could do personal care for Gord. I would arrive and he would still be in a nightgown or the previous day's clothes. At one time, I was told it took 7 staff to do a necessary change. They were always surprised when I would come in and change him single handed. He is aggressive and it has been difficult for him to adjust to caregivers coming in. I have his name down for placement and I am sick wondering how they will ever manage to do personal care for him. Sometimes, he won't even allow me to.
mothert--my husband was never violent. He was put on antipsychotics to make him more compliant and less agitated in the early stage of the disease and it worked for about 4 years, with minor adjustments. This year it became apparent that adjusting the meds at home was no longer feasible, and so his neuro admitted him to a geripsych unit in order to, as jang said, have his meds adjusted in a controlled environment. There was no catastrophic event, in fact, that's what I was trying to avoid. My philosophy has been to try to stay one step ahead of trouble!
Same situation as jang described with personal care in the unit--he cooperates much better with me than with the staff. (I think this must happen much of the time.) They keep telling him that his wife wants the care done, and they only get the toileting, bathing and meds done. The rest (shaving, tooth brushing, hair combing) I do when I visit. Most days it takes at least 2 aides working together to do this. One of the aides made me smile today, she said she tried to imitate my manner with him when approaching him, calling him "sweetie".
Regarding bringing help into the home, it was imperative that I make it seem like they were here to help ME, by cleaning the house, etc. He wanted to come with me instead of staying with the aides, but I always said I was going to exercise class, knowing that's the one place he wouldn't want to go. I was able to get respite by bringing help in; I felt that it wasn't as problematic as putting him in an ALF for respite.
The bottom line is, you need to get him medicated so he will cooperate with home health aides, daycare, or whatever else you want to do to get respite.
I do have a POA, is that enough, or do I have to go to court to get Guardianship? Also, I have talked to him about bringing in help for me and that the help is also for him (because I don't want to place him in a NH when the time comes). Sometimes he gets it, but lately, not so much. I do know of a woman who is a live-in helper to another gentleman and has done this for many years and has approached me as a potential next client. At first I was put off, but I grilled her for about an hour after the last support group meeting and I'm pretty convinced that she could work out; however, she would probably have to move into our house. Now, that might not be all bad and I could get used to it - not sure how dh will manage that; but it's not an issue at this point in time - I'm just not sure when it IS the appropriate time to do this.
I have doubled his Celexa and most days that has worked out well with his over-consumption of alcohol and ensuing aggressive behavior. I could just not buy anymore, but that also would cause a major nuclear event. I wish I could just threaten to leave him until he got his sh*t together, but we all know that's not a possibility at this juncture. I'm going to give the Celexa another month to see if I get significant improvement in dh's behavior in the evening and if not, back we will go for the stronger stuff. I'm totally onboard with giving him whatever to improve his attitude and gives us "quality of life", these drugs are a lifeline to us who have to care for out of control los. After all, we all must die someday and, personally, I would not want to live into the later stages of AD Hell. Dh and I have never been big on pharmaceuticals in the past, but now, they are most appropriate and make a BIG difference on our quality of life. I will go for whatever makes life more livable for both of us.
mothert--are you getting support from your husband's doctor? It seems to me that dealing with dementia plus an alcohol problem is something that requires professional guidance.
mothert, if you go to the stronger meds, remember that many of these meds you may need to use later wont mix well with alcohol. could make him worse or side effects. so if you can start weaning him off the alcohol before you need something stronger maybe it will be a easier on you both. like marilyn says maybe consulting his dr about how to go about the alcohol issue would get you some answers. i am not sure, but i think you do have to have guardianship and that entails going to court and asking the courts to deem your spouse incompetent to act on his own behalf. then you could probably place them when the need arises. without this i dont think you can place them against their will unless they become violent and need to go to a psyche unit for evaluation- divvi
Re. not being able to place someone without their consent unless having guardianship: I remember a year of hell when my husband would not let anyone come in to help but insisted that I do everything. When he had his spontaneous compressive fracture of the coccyx and was hospitalized for a month, the hospital began to talk about discharging home to me. By now he had deteriorated to the point where I knew that at my age and own physical condition that I could not take care of him without help, and that it would be the same old battle and perhaps more fractures with our 3-story house and his insistence on spending all his time on the top floor. I asked his children to help, even move in if they wanted to, but no one wanted to help. So I told the hospital social worker that I couldn't do it alone, and that was a fact. It didn't matter if they said I couldn't place him against his will. What mattered was that no one could force me to care for him if it were physically impossible for me to do. Having already had 6 years of taking care of him, no one but me knew what that entailed, and what they were attempting to do was railroad me into doing an impossible task. A lawyer friend of mine whose mother was in the hospital was told the hospital was sending the mother home for the daughter to care for. The legal fact is that in B.C. Canada, no hospital can put a patient out on the street; the hospital has to place them somewhere they will be cared for.
TT, I was told by Lynn's case manger that I needed to have guardianship of him before I could place him. They suggested I do this even before placement as he was refusing any in-home help as well. I didn't force the issue until it was absolutely necessary. Then I did go for guardianship, it was a simple process. There are a few threads here about getting guardianship that might help you. Lynn never needed to go to a psyche unit, so I am not sure if the laws are different in this case.
Divvi - I have talked to his doctor about his drinking and he said if the Celexa doesn't work to tame his aggression, then we will have to go back to see the doctor and deal with his drinking. I'm not sure what "deal" with his drinking will entail and I don't think he will stop drinking just because the doctor makes an issue of it. In fact, the last time we were in to see his doctor, the doctor told him he should not be drinking and dh promptly forgot that. So, I'm not sure what the doctor can do to make that happen. About the only thing I can do is stop buying the alcohol and then all hell will break loose here. So, I'm more than a bit apprehensive about dealing with this issue at all. I guess I could just walk away and let him have the house to himself, but that would be pretty irresponsible. I'll just have to ride this out for a while and see how it goes. I'll keep you all posted.
This drinking thing has just become an issue in the past year or so. I did notice a year ago when we were on a cross Canada train trip that he drank too much and got belligerent and disoriented and couldn't hold his urine, either. But, it has become more and more of an issue since I have gotten on him about it. It's kind of like when he lost his golf club last year - he harped on that club constantly and swore that the neighbor kids stole it and that went on for several months until I bought him another club . His drinking seems to have become more dear to him because it bothers me and now has become his cause, sort of. He doesn't remember being abusive when he drinks, thinks I'm making it up. Can I run away from home now??
Celexa is an anti depressant, and in dementia, depression can present as agitation. However, speaking from our experience, Celexa alone was not enough. My hb needed Seroquel (anti psychotic) added to it.
Alcohol abuse is an area I'm not familiar with (thankfully), but can't a doctor place a patient in some sort of detox program (inpatient) if they are a danger to themselves or someone else? I agree that if all the doctor does is tell your husband not to drink, it won't be effective.
If a first family does not want you to have guardianship, then it is expensive and time-consuming to get it. In my case, I would have ended up taking care of my husband, with no help from them (they didn't visit him), and they would dole me out money as they saw fit. They had already obtained illegal P.O.A. (I had already had it, but their new one cancelled mine out). In addition, they had emptied my husband's bank account and left me to pay $31,000.00 of bounced cheques - I had to borrow money to do this. All this mess took even more money and 6 months to clean up.
Mary, what is a "first family"? Does that mean natural children? So sorry to hear your husbands children are so ruthless. I am so blessed that my step children consider me to be their mother and definitely their father's caretaker - they are so grateful that he's not on their doorstep. Dh and I have taken great pains to have Trust documents drawn up and carefully spelled out the conditions that the children inherit anything - when I'm dead. Neither of our girls are in first place as executors of our estate. At the appropriate time, the attorney will transfer all assets into my name only - I'm thinking that time is pretty close at hand. However, I do know how the prospect of receiving a big check at the death of a relative makes many normally wonderful people lose their minds and caring hearts and ME, ME, ME takes over. Hope that doesn't ever happen to us.
As for dh's doctor committing him to a detox program, I'm sure he could, but not sure how productive that would be for him in the long run; I don't think he would come out any different or he could come out much, much worse. However, if he were somewhere that alcohol was not ever present or allowed for a long enough period of time, perhaps he'd forget all about it in time (wouldn't that be wonderful?). Maybe I need to go on an extended trip and find a Respite Care program to take him while I'm gone (just kidding). I probably will have to just strap on my combat gear and take all alcohol from the house and be steadfast about not buying anymore ever (I get anxious just thinking about that fight).