Joni, I still have my husband at home, so I have not experienced the anxiety and loneliness associated with placement in a LTC facility. However, that being said, I still worry constantly about his wellbeing, much the same as you did. Will he fall and break something right in front of me, why isn't he eating, he's starting to look frail, why is he so agitated, etc. It's exhausting.
It is good to know that you're free from the constant anxiety. Keeping you and the others in my prayers.
I am visiting DH this morning, Easter. I have been everyday but one. I just keep wanting to bring him home. I do remember what it was like. But I cannot decide which is worse. Visiting here or lack of sleep and constant worry. I still have both with him being placed. I just don't have the agony of seeing so many others with this horrific disease if he were home . I am gong to have to leave soon or lose it here. Today is to much for me.
I can't say from experience what it's like to visit someone in a facility, but I can relate to home care without much sleep and watching and worrying about him every minute.
Just do what is possible for you - visit and stay for as long as you are comfortable. Go home, rest, and come back another day.
Acceptance of any change takes time. Stop beating yourself up.
Joni I know I will be in your shoes soon. I hope I will feel the same. I found myself praying last night for his release from This disease that has rendered him a helpless shell of the man he was. He would not want to remain like this. Yet, I wonder how I will really feel when the inevitable happens.
Jackie I felt just like you the first few months I placed my husband. All i wanted to do was bring him home. Those feelings did pass when I realized he needed a team of people to care for him. You will realize you made the right choice. It is very hard to visit and see others too.
I will go to feed my husband dinner tonight. I didn't feel like celebrating a holiday today. Had brunch with my children . Trying to treat it like any other day. It's easier to deal with that way.
It was very interesting to read what you said about the grief being worse BEFORE death. My counselor and I were talking about that during our session this week. The last 20 months of placement have been so horrendous. I have experienced such debilitating grief, loneliness, and difficulty trying to build a life as a single, that I didn't think his death could make it any worse. I said to her that I felt that when he does die, I will have gone through most of the worst of the grieving process. She wholeheartedly agreed ( She's been doing grief counseling for over 30 years, so she has seen it all). She said that in her spousal grief counseling groups, the Alzheimer widows are different than those who lost their husbands to a sudden heart attack or even a cancer death. Everything the "other" widows" talked about feeling, the Alzheimer widows said - Nope, they didn't feel that NOW. They had already gone through those steps. Not that they weren't grieving. It's just that they were much farther along in the grief process than the other widows.
TIME. TIME. TIME. It all takes time. 20 months ago, I was exactly where you are now. I worried myself sick over what was happening to him every minute of the day. I visited every day. He is in a special locked Alzheimer Unit of a nursing home. 19 beds. 19 advanced Alzheimer patients. It was and still is horrible to witness, but TIME, counseling, and determination have gotten me to the acceptance stage. I still get very depressed seeing him among all those vacant eyed Alzheimer patients, but I know that there is no way I could take care of him at home. He requires a lot of physical caregiving that I don't have the ability to do anymore. I am not equipped to deal with the rage episodes, which although not a daily occurrence anymore, are frightening and dangerous to him as well as me.
I have been told repeatedly that it won't do him any good for me to give up living because he has Alzheimer's Disease. Hearing it is useless. It took lots of time, stumbling, trial and error, as well as emotional pain, for me to decide on my own that it was time for me to live. You WILL get better, but it will be on your own timetable.
Grief has no time table. Bill suffered for over ten years. He was in a facility for the last four of them. When "the call" came it was like a kick in the gut. I felt more alone than ever before.
Joang, thanks for sharing what your therapist said about grieving as I was wondering about that. I am seriously considering seeing a therapist as well mostly for me and how to move on with my life. I am managing day to day but still find it very difficult to go someplace alone and furthermore have little interest in venturing out. Knitting seems to bring my a lot of comfort right now. I am having a care plan meeting this week and I think a couple of my sons will be attending the meeting with me. I did not ask them but am happy they are becoming a little more involved. I like you know I could not care for him at home and that he requires a team of people now. To Joni, I know exactly what you are feeling right now. I think this is pretty much normal. Now that he is in hospice I feel like a weight has been lifted and have experienced more peace because I know he is getting the absolute best care available. It is all a journey. One of the hospice aids told me Saturday that as we continue the journey we can look back and see how all the right people showed up at the right time to help and support us on the way. Right now hospice is trying to find a way to help with his agitation. The nurse told me that they view agitation as pain.
I like what Hospice told you about looking back and seeing how all the right people showed up at the right time in the journey. I can see that looking back at my husband's last few months. Hospice is wonderful - they were there at every step of the journey and helped tremendously.
Joni, I agree. It was much more painful for me to see what the disease had done to him over the years than the last goodbye was. I, too, prayed for his release from the shackles of his disease. I guess that is why they call it the LONG goodbye. We grieve every single step along the way!
I agree Aunt B - Indeed we do grieve every single step of the way. My therapist says the same thing Joan. She too has been a grief counsellor for over 30 years.
I, too, felt like I lost my husband the day he went to ALF. That marked the end our marriage as I knew it. We would never live together again. I was ALONE and the grief was unbearable. It was one of the worst days of my life. I have been grieving for almost. 8 months.
I wonder if it is easier for caregivers who have placed husbands, than those who keep their spouses at home ,when death ultimately takes our spouse.
I want to believe that the pain will not get worse again. I don't know how much more my heart can break.
Do you ever just want to feel happy and carefree again? I do.
I think we all react in different ways. I do not feel that my husband's admission into LTC was the end of our marriage. We're still married and he's still the same guy - he just does not live in our house any more.
Strangely, the day my husband was placed was not the worst day of my life. There are two other days contending for that honor. One was the day that he was diagnosed. I think of that event as "the day the music died" (as in the song "American Pie"). I think I cried nonstop for about a week. The second "worst day" contender was this February, when my husband was taken to the ER for pitching a fit, throwing a chair and what not. I met the ambulance at the ER, stayed with him for 3 hours while they did nothing, and then followed the ambulance back to the veteran's home, where I got a lecture from the unit nurse about how he had ruined her perfect record. It was 3 degrees below zero F, after 1:00 a.m., and the parking lot had not been plowed. I was frantic that my husband would be kicked out or something. I did not cry one tear but I almost lost my mind for about a week after that.
I wish I had a good therapist, like the ones Joan and katherinecs have found, who understand the magnitude of our losses. The guy provided by my insurance means well but he's really not up to the job. He is big on mindfulness meditation and says dumb things like, "It can't be that bad - it's not cancer!" or "Why don't you take your husband to his parents' graves so he'll realize that they are dead?" I only go only when I absolutely have to in order to get the anti-depressants they give out. I am going to switch insurance so I can go to someone else.
Do you think that if you told your present insurance company that you find their therapist inadequate — which he is! — that they would give you a choice? I think that many insurance companies in Canada would. If I had any authority in an insurance company, and one of our clients said she would switch to another company who provided a better therapist, I'd move on it pronto. A poor therapist is a menace (and there are always ones at the bottom of their class). Dump this guy. Your family doctor could prescribe anti-depessants and probably wiser support.
mary75*, I should have done that a year ago. I've been in an HMO but when I turned 65 I became eligible for the same insurance my husband has through the Dept. of Defense, which allows me to go wherever I want. I just never filled in the papers. (Too depressed, I guess!) But I will do that this month and look elsewhere for medical care.
Oh Myrtle...I cannot count the # of times I have wished it was cancer! At least then we would have had treatment options of real value, hopes for a cure, love and unending support from friends and family. The diagnosis we have is one totally without hope! At least on this side of Heaven! I am apalled at the level of incompentance from this provider!
To Myrtle and others, Yes I wish it was cancer too but the reality is it is not I plan to check my insurance to see if I can find a good therapist. Have not felt the need until now. Yesterday Hospice called and they moved him to their Hospice unit for "symptom control." His symptom is constant agitation. They tried respiridone and it did nothing. Talked to the Hospice doctor and she says unfortunately there are no good antipsychotic meds for dementia patients. They are going to observe him and then try something. He just does not sleep and doctor said they cannot do anything for his sleep patterns either. The usual stay for symptom control is 3-5 days but that is assuming they can find something that works. Right now he needs constant one on one care. They had him in this adult highchair yesterday and he actually was trying to crawl out. If they cannot find anything that works, they may decide to keep him there for the duration. I actually hope that is the case because he has a lovely private room close to the lake. It is wonderfully quiet and peaceful and I have peace knowing that he is getting the absolute best care available today.
I saw my husband on Easter and he didn't even know I was there. I fed him his dinner but he wouldn't drink anything, just kept the liquid in his mouth and spat it out. Sometimes he even spat it across the dining room table. Yesterday I went there again to feed him dinner. He wouldn't eat or drink anything, just kept spitting everything out. I did get him to eat some chocolate pudding. I was on my way home when I remembered I had a banana in my bag. He liked bananas. So I went back to the dining room and tore off pieces of banana and gave them to him. He was chewing it and seemed to enjoy it. After I gave him three small pieces, suddenly he began slowly spitting out all his chewed banana. This is a new stage I think. Am I right?
When I got on the elevator to go home I told myself I couldn't take it anymore, I couldn't go back. I didn't want to go back. This is the first time I felt that way. I need to go back, though, to see how he's doing today, if he's still doing what he did yesterday. He's becoming more incontinent with urine and bowel. He wasn't before. I am so over this. I don't know what to do.
My heart breaks for you, Bev but you will do what you know is right and good just like we all do no matter how hard it is for us. It's just what most dementia care partners do. It's called love. It's hard and if we don't take care of us it will take us as well. My case is different right now but I know it will be like yours before long and I know I will feel just as you do and I hope you will be here to comfort and guide me. Have a good cry and then do something nice for you today. You deserve it.
Well just found out hospice is sending him to the geriatric psych dept of the hospital. Seroquel is not working sufficiently for him to be safe. On top of that the dementia unit the social worker and I checked into for him to go to will not accept him due to the fact that he is yelling out, is still ambulatory and thus a fall risk and hardly sleeps. The sundowning is really bad even on the seroquel 3 times a day. He can be calm and polite one minute and totally out of control the next. The social worker told me in the years she has worked for hospice she has never seen a patient whose behaviors they could not control with medication. He is allergic to Ativan and is also on trazodone for sleep which is not doing much either. Usually sundowning happens in the evening but there is no pattern for his. One day he went from 11 in the morning until 11 at night and then finally settled down and slept a few hours. Heartbreaking to watch. I changed his shirt yesterday and is literally skin hanging on bone.
CO2...My husband passed away after approx 3 weeks of what they called "terminal agitation". They couldn't do anything with him on geri psych so we transferred him to the Hospice unit in the same med center. He was gone 2 days later. They initially gave him a boat load of meds to get him down. He was peaceful for the last two days without further meds. Just 2 weeks before he passed on, he was still ambulating, eating (being fed) and able to talk. All this to say...perhaps he is closer to the end than you suspect. These days my main regret is that I wasn't aware that the end was so close due to the fact that he wasn't bedridden, not eating, unable to communicate etc. I know that we never really know, but if I had had even a clue...I would have spent that last whole day with him. Just so grateful that I had the last 2 hours with him!
Aunt B. thank you for the information. I am sharing it with my kids and may share it tomorrow at the meeting with Hospice. This social worker does not really know my husband's history and thus does not know of the steep decline over the past few months. She told me today that he may not qualify for Hospice once he is out of the hospital. But I am not concerned about that. I know my husband and he is dying. Dying does not necessarily mean lying in a bed sleeping and not eating. That is the "normal" way if there is such a thing as normal. I think that is the type of dying process that Hospice is most familiar with. But as we know all know, with this disease, there are a multitude of exceptions.
The facility where DH has brought in a psychiatrist for DH. They will have one once a week to help find out why the new behaviors. He is going to a urologist Wednesday. They think that his accidents at night could be prostrate. He has been at facility for a month today. The accidents stopped, once they listened to me and left his bathroom door open with the night lights on. His bed is where he can see it when he wakes up. Not that he recognizes things always. They said that he had a run in with another resident. Well, being there and watching the residents some of the run ins are because they do not understand each other. I have watched the women argue everyday. The men not so much. But listening to them, they will ask each other something and when the other mumbles or answers something off the wall, they get frustrated with each other. I feel that the other spouses and family members know how to handle them better than some of the CNA'S. Not all, but some.
How do they think a psychiatrist can figure out or talk to DH about what is bothering him. He tells me he needs to talk to me and cannot get it out. He often just says that and then goes to something else.
Jackie, I'm thinking that a psychiatrist would be able to evaluate his meds, and maybe make changes in them or prescribe something new that may calm him somewhat? It's not likely the psych consult would be for any kind of therapy/counseling. Make sure that you are kept informed of the recommendations from this consult and if med changes, the reasons for the changes.
Jackiem29, My DH is currently in the hospital trying to get a handle on his behaviors. They finally got him to sleep at night I think with 50 mg of Seroquel but still very agitated during the day. the nursing home will not take him back unless these behaviors are handled. heart breaking to see him yesterday, sitting in a wheelchair, restrained and totally out of his mind with hallucinations. I doubt my DH could tell the doctor anything of what is going on with him. The hospital is supposed to find a place for him. They will probably recommend a dementia unit. where he was before was a typical LTC facility and probably not the best choice. So since mid February he has moved to a LTC family, to the Hospice House where they could not manage his meds and now to the hospital. It will be 4 moves in about 2 months. This is killing me.
Jackie29, These days, psychiatrists are not the ones who talk to people about what is bothering them. Since they are M.D.s, they can prescribe medication and that's what they are generally used for. Psychologists (who are not M.D.s) are the ones who talk to people about what is bothering them. I agree that dementia patients are unlikely to benefit from psychotherapy. My guess is that they want to adjust the medications he is taking.
Jackie and CO2, I am so sorry to hear of your difficulties. It is heartbreaking, what we go through with our loved ones. CO2, it sounds to me as though your DH will be much happier at a dementia unit, where the caregivers and staff are experienced in dealing with all dementia behaviors. I'll be thinking of you and praying for you that this will need to be a good move for him and for you.
I want to resign my position as care manager! Lately DH has been getting up at night and roaming the halls. A 3rd shift CNA said he was put in bed at 9:00PM on Saturday night and got up at midnight. She put him in his merry walker and he followed her up and down the hall until 4:00AM when he went back to bed. She said he just sat down in his walker and waited for her to come out of other residences rooms. He is nonverbal and has not yet become aggressive. This sounds normal for an ALZ patient to me. I do not think he is ever aware of night and day. The staff has asked me on several occasions if I have any suggestions to get him to stay in bed at night. If I had answers to half of ALZ patients behavior patterns he would probably still be at home. I just keep waiting for them to tell me they can no longer meet his needs. I would love to give up having any say in his care, get an unlisted phone number and live free again. Just wishful thinking but it really is what I would love to do.
Let me get this straight, AliM. Your husband is nonverbal, non-aggressive, has trouble sleeping and just wants to be out where the aides are awake? This isn't even a problem!
He is in a facility because the 3rd shift aides are hired to watch the residents, asleep or awake. Don't let them guilt you into believing there is a problem. You may need to go to administration with this "non-problem" to make sure the staff understands that this is not your problem, it isn't even a problem, and they all need some serious in-service on AD behavior.
My husband is often roaming all night. The aides pop popcorn and get him to fold clothes, wash the tables, and watch movies with them. He too makes the "rounds" with them and they have trained him to wait quietly in the hall while they do they bed check. He is very mobile, but congenial, and was often up at night working. One of the reasons he was placed is because I couldn't keep an eye on him with his erratic sleep schedule. That is precisely why the facility has three shifts of aides.
If you can afford it, hire a case manager to hash this out with the facility. It shouldn't cost more than 1-2 hours worth of service but the case manager can handle administration and staff attitude and push back better than we can.
What I am learning about LTC facilities is that certain behaviors are just not tolerated or at least that was the case with my DH. He was yelling out when left alone, hardly sleeping and urinating inappropriately and lots of agitation. Altho these would seem to be "normal" behaviors for dementia patients I was told that he could not return until these behaviors are taken care of. He is now in the hospital trying to find the best cocktail of medicine for him. They are giving him restoril and 50 mg of seroquel at bedtime and he sleeps straight through which is something he never did. He is still agitated but it is better. The fact that he did not sleep is the main reason I placed him. I still do not know if he will be returning to the same place as before but by him getting on these medications I am hoping it will settle him down wherever he goes and curb the constant worry about his behaviors that I have.
AliM, Who is making these complaints and requests for suggestions? The aides or the third shift nurse? If it is the aides, they may just be letting off steam or maybe they are poorly trained. Before you get upset by this, talk to the nurse. It may not be an issue at all.
I agree with marche that your husband's staying awake at night should not be a problem since he is not disturbing the other residents and is not aggressive. In my husband's unit, there is often someone who is awake in the middle of the night, having a snack, watching TV, or talking to an aide.
myrtle, It is the CNA's an Med techs that are complaining. All of the staff work 16 hour shifts on the weekends, when most complaints occur. I think they are tired. I have never understood how the Baylor system is allowed in the medical field. Even truck drivers are only allowed to work ten hours straight before taking eight hours off! Lots of family members have told me the care for their loved ones is minimal on weekends. Marche, I would consider hiring a case manager if I thought it would help, even though the closest one is a hundred miles away. I have seen what happens if a case manager is called in or a complaint is made to the local ombudsman. It doesn't take long before family is told that the facility can't meet their LO's needs and they have 30 days to find another facility. This is a Skilled Nursing Facility with RN's on duty around the clock so I suppose I thought care would be better than it was at the ALF he was in for the first 17 month of placement. I am going to try to let their complaints go in one hear and out the other. CO2, My heart goes out to you. You are living through what I fear may be coming down the road for me. Moving from one facility to another because nobody wants to care for them is pathetic. I really do appreciate all the hard work the CNA's do. Having just started the eleventh year of dealing with this, my old noggin is worn out! Thanks to all of you for caring.
AliM, I so can relate to what you are going through. I too felt his care was better in the ALF. I guess for me it was rude awakening learning that some behaviors are not tolerated. I guess all we can do is our best. I am going to try my best to get back into hospice once he is out of the hospital. It is such a sad fact that most nursing homes like the patients to basically sit in wheelchairs all day and not cause problems. My sister had a friend whose father was aggressive and I think he was moved 5 or 6 times before he finally passed. One thing I noticed is my husband does best in hospice or in the hospital because of the one on one care. I know another move will create more decline. In the hospital he is feeding himself finger foods and in the nursing home he had to be fed.
AliM, I misunderstood what sort of facility your husband is in. There is a huge difference between the way nursing homes and ALF are managed. Perhaps there is something of value here to be passed along to those coming after us and it might be good if we could gather some facts about the options available as patients progress in the disease.
I have no experience with NH, so others should weigh on on that. What I do know is that quite a few residents of my husband's ALF stay there as they deteriorate and die with hospice in attendance. That wouldn't work for everyone, of course, but it is nice for the residents to to stay in a familiar environment with more ancillary help brought in. It appears that as the end approaches the staff steps back and hospice takes over and that makes sense since the staff really aren't trained for end of life care.
I wonder if this is a universal set-up, regional, or specific to individual ALFs. Does it depend on the the management and is it something to ask when visiting potential ALFs?
I find it distressing yet believable that the NH would be vindictive if a case manager is brought in. Reading the threads here, it seems that everyone looks the other way and cannot be bothered with difficult patients. As always, the burden of care with few to no options is dumped back in lap of the caregiver. The NH is really bullying the family by threatening that they "can't meet the needs of the patient" which means that they just want easier patients.
I hope others weigh in on this topic because it is very important for every caregiver to know how the system works.
The night shift where my hb is also would like all patients to sleep, duh. NSAs on other shifts wonder what the night shift does all night as the others shifts have the residents up most of the time and have to do meals etc. I have worked nights and know it's nice if all is quiet but that is not always possible. If you hb is not disturbing others who are asleep then there shouldn't be a problem. Do you have care conferences with staff? If so bring it up then, I think things get more attention from these meetings. I try to talk to them without it sounding like I am judging their care but asking them what they think is the best solution, throwing the ball in their court so to speak. It's really hard to be caremanager when most things are not under our control. If all alz patients were like the ones they portray on tv in their drug ads it would be great. That is my pet peeve that they don't show any on the reality of what alz is like, that's partly why people who are not directly involved with someone with alz have the attitudes they have, what's the problem? I had a sister comment that there are many worse things than what my hb has. Yes but what could be worse that not being able to tell anyone what's going on with you? Not knowing pain or night from day? There, that's my vent for today (I hope) and hope all of you have a good one today. Dorie
AliM, I can't imagine working 16-hour shifts. No wonder the aides are tired.
marche, My husband is in the secure dementia unit of a state veteran's home so I don't know how to classify it. They have structured activities all day. None of the men there are bedridden. Most are ambulatory and a few are in wheelchairs. When the residents become bedridden or need more nursing care, they are moved to the "nursing care" unit or sometimes to palliative care or hospice, depending on their condition. It's all in the same building.
When I hired a care manager to go with me to a meeting about dealing with a behavioral problem, the director of nursing was very threatened and asked for a list of subjects to be discussed because he did "not want to be set up." I assured him that I would give him a list of topics. I also told him that the person he should worry about was not the care manager, but me. Without the care manager, I would be likely to "lose it" but she was there to keep me on track and translate the medical stuff for me. He calmed right down and the meeting we had later went very well.
ALIM--I had hoped to keep my husband in the ALF for the duration but I think they had such a wait list that they said I had to move. One mistake I made was not to inquire how long he could stay there. Had I known that I might have chosen another facility but then he is on Medicaid and I had few choices. talked to the hospital social worker today who told me that nursing homes unless they accept patients with behaviors, generally will send patients back to the hospital if they cannot control their behaviors. She said the goal is to NOT have them bounce in and out of the hospital. She said she has so many families who place their loved ones someplace and they end up back in the hospital because they cannot handle their behaviors.
I also found out my husband has had numerous aggressive outbursts requiring IM medication multiple times throughout the day. This is not good but she said it is still early as he has another week there. She said they can control some of his behaviors with medication but probably not all
She gave me a very short list of facilities. visited one today that seems okay. it is not pretty but no smell of urine and the entire population has behavior issues.it is also half the size of the place he was at, where hardly anyone had behaviors, which was the problem. They did not know how to handle him. It is close to my home and at this point, I am tired of moving him. I just need to get the current hospital doc to request a hospice consult and hopefully he will qualify.
C02, The facilities do have a way of manipulating the system to keep within the law. I cannot understand how they think all of the moving from one place to another is in the best interest of the patient. All advice we hear is to keep things as routine as possible. The patient is thrown at the mercy of new staff with every move. I do know safety for all is a must. What I don't understand is why facilities, that get the majority of their income from federal dollars, aren't forced to keep a room or two on lockdown available for aggressive behavior and or med adjustment. Familiar staff would have to be a plus for the patients. Behavior issues and urinating where they choose are "normal" problems for lots of ALZ patients. Facilities make no effort to come up with any way to deal with it. They just ship them out the door and problem solved. Make that problem is shifted back to family. I will get off my soapbox and quit hollering! It is so frustrating. I do hope you can find somewhere suitable for him. It is okay if the place isn't pretty as long as he is being cared for and that you get some relief. Good luck, C02, I will be thinking about you. Your posts help me a lot and I thank you from the bottom of my heart.
My husband is in a long term care facility with a dementia unit near my home. I did not choose it for its beauty. It is not at all beautiful, but it is clean and he gets pretty good care there. As most of you know it is not easy to find nursing homes for dementia patients. My husband would not have been able to be in an assisted living facility. He would not be able to stay in a room by himself. When my mom was in a rehab center several years ago there was a memory care unit near the elevator I used. I used to think how terrible it was that some of the patients would be sitting out near the elevators or around the nursing station. Now I know the reason they do that is because these are the patients who need careful watching, plus it looked like most of them enjoyed the smiles and hellos from the people getting off the elevator.
I was at my husband's care center today and he looked so well, talking and joking like I haven't seen in quite a long time. But, he isn't eating, would not eat a thing I gave him, which seemed unusual to me. He has lost 8 lbs, where when he first arrived there he gained 10. I'm hoping this isn't a signal for bad news to come.
AliM, I think you have wonderful ideas on how to improve patient care in a nursing home. Maybe at sometime down the road you can connect with someone and present your ideas. Honestly when one is in this situation, there is little time for things like this, but I do believe your ideas have merit. You are so right they just ship them out and really do not care.
Bev, Thanks for you input on the care facility your husband is in and the fact that it is not pretty. Honestly the fact that I did not smell urine was a big plus yesterday when I visited. Last night I went in the evening and sundowning was horrible. I went in and he was screaming by the nursing station in the geri chair stating he needs help. the poor nurses were running around as he is not the only one. As soon as I held his hand he was fine. When that happens I feel like I need to be there all the time but I know I cannot. I fed him ice cream, wheeling him around in the wheelchair, and read from the newspaper. These are all things he likes. I notice he cannot control his saliva and the nurse said they were going to do a swallow study. This is the first time anyone has said anything. I know his chest sounds bad but they want to rule out aspiration. the hospice nurse told me that aspiration can be silent and you do not know even know it is happening. Bev, is your husband on Hospice? If not I would certainly call and get a consult. It cannot hurt. Weight loss is a clear sign of decline as is the not wanting to eat I am going to see if the hospital psychiatrist will not write for a hospice consult when he is discharged. Hospice offers suberb support to both the patient and the caregiver.
There are no US national standards for ALFs. ALF definitions and regulations are done by the states (in the US). Even within a state ALFs can vary greatly.
My wife's first ALF dealt with her behaviors by giving her notice, I am surprised that after the last incident they didn't sent her to the hospital. Her current ALF is dementia only, has a psychiatric staff and has not sent her to the hospital when she has acted up (though they have come close). They want to care for her on site and not ship her off. They know if they can't handle her she would have no where else to go.
That thought of someone working a 16 hour shift in an ALF boggles my mind. It is important that all staff is rested and fresh. They have challenging jobs, I don't see how they can do their jobs as they get tired and worn out.
It is nothing for medical residents to work 16 hour days, often consecutively. All residents beyond first year work twenty-four hour shifts and depending on the hospital volume and specialty that may mean working straight through. Think about that!
There are work rules for pilots, truckers, air traffic controllers, but not for doctors. Residents are essentially indentured servants making barely enough for one person to live on, belittled, yelled at, and forced to work horrific hours. The next time you are at a "teaching hospital" have a friendly little chat with the resident about the hours they are expected to work. Of course they may not tell you the whole ugly truth since fear of retribution by superiors is very great.
Four hundred physicians a year commit suicide. That is the equivalent of the entire graduating medical class of the largest medical school in the country. Many of those suicides occur in sleep-deprived, depressed, stressed and over-worked residents.
Since this is a thread about spouses in nursing homes I have to vent today. I went yesterday to see my husband and as I walked in the nurse and two aides were in the room with him. They said that when they were removing his pants to change him they accidentally pulled out his folie. There was blood everywhere; my husband was wincing and saying how much he was hurting and I was about to come undone. I was so angry and I just stood there while they did what they had to do. For the rest of the day my husband kept saying I have to pee and wanted me to take him to the bathroom. He is wheelchair bound and over 200 lbs so there was no way that I could do what he wanted. Then he told me he would be better off dead and he cried and cried. I have been married to this man for 36 years and have only seen him cry a couple of times in that entire time. Now it seems he is always depressed and wants me to take him home. I just feel like my heart is being ripped out of my chest. How much suffering does one person have to take! I cried all the way home and I have just been numb today. I go see him tomorrow and I hope that his mood will be a little better. He was always such an easy going guy and now I am seeing a tortured man that wants to go home. How do we stand this? I just don't know. I want to run and scream and cry and throw a fit. Not very adult or responsible actions I know. I realize that things happen in nursing homes and the aides did not hurt him on purpose but it just adds insult to injury. Ok..I have vented now. Wish I felt better. Should I ask the dr about maybe putting him on an anti depressant? Is that a good idea? I hate this!
dellmc53, I am so sorry to hear what your poor husband is going through. How heartbreaking for you. I agree with you that sometimes accidents happen and if you believe the staff are doing all that they can to help him, we just have to get through each incident. I would definitely ask the doctor for meds for depression - and possibly some pain meds for a while, because his penis must really hurt.
My goal with my husband who has been in a locked dementia facility for 2 years is to keep him content and keep him safe. I don't care what or when he eats, where he sleeps (TV room couch, another guy's room, his own bed, it constantly changes) if he ever gets out of pajamas or is shaved every day. If he cannot tolerate the intrusion, it's fine with me if they just let him be. He is currently on Neurontin (Gabepentin) for his agitation/anxiety and Celexa for depression. I'm never sure if the Celexa helps but I know that Neurontin has been somewhat of a miracle drug for him. Every time his anxiety/agitation kicks up (around full moon or as his disease progresses) they up the dosage of the Neurontin and he settles down. My goal is to keep him from escalating so that he needs to go to hospital for geri-psych meds adjustment.
I hope he feels better very soon - and that you can get some peace.
Thank you Fiona68. It just seems like to me that there never is peace. I have been trying to pursue peace and I really thought it would be better after I realized that I no longer can take care of my husband. Two years for you...it must be awful. I have just started this journey of placement and already it is wearing me out. I know that I need to settle down and figure out how to live without him...I just can't seem to figure it out. All I want to do is cry and it seems that I do that at a drop of the hat. Do you ever get used to it? I just don't see how I can do it and yet I have no choice as all of us who are on this website have faced. I keep thinking what happened? How did this happen? He was FINE! Not really...he wasn't. I was just in denial. Thank God for this website.
dellmc53, I am so sorry to hear about what you are going through. It must be heartbreaking to say the least. I was told by Hospice that nursing homes do not like to have Foley catheters in because of the type of thing you describe. It the patient is aware enough, they can pull it out and there can be some serious damage if that happens.
I went to see my husband today who is in the geriatric psych unit of the hospital. Talked with the social worker and the doctor is still messing with his medications and he could be there another week. They are suggesting he go to skilled nursing for rehab before the nursing home. I do not know what to do. I feel like that is sort of like trying to increase his length of life and in this condition I do not want to have him go through more suffering. Since being placed 6 days ago his functioning has decreased. He basically sits in a wheelchair sleeping and drooling. Today I got there and he had not touched his lunch. I did get some food into him and he woke up a little bit. She tells me it is always safety versus function. If you treat for safety their function will more than likely go down. I have lost count now which medicines he is on. They started Neurontin for pain as he was complaining of pain.
In answer to your question, I do not think one ever gets used to it. For me just as I get used to him being a certain way, something changes and I have to adjust yet again. The tears are good. Fortunately, I do not cry quite as easily although I did when he was in Hospice. I usually cry when someone asks how I am? Yes thank God for this website. You are not alone.
As to residents, there has been pushback for years against the 16 hour (or longer) being on call. Many doctors who have been through it see it as a rite of passage. Some argue that it is important for doctors in training to do work when stressed and tired since that happens later. Others see patients in danger from doctors who are too stressed out.
CO2, I have no advice other than to think about his quality of life right now. Prolonging his life if he has not quality of life has not point, especially if it means making life more miserable for him.
This is just my experience with having my husband in two different facilities. The care he received in the Skilled Nursing Facility here in southern California was AWFUL. No way to say it kindly. Everything he did was a problem to them, they called me during the night when he wouldn't sleep and complained all the time about his behavior, even though it was only mildly disturbing at worst. They told me I had to hire a one on one caregiver for him 24/7. The CNAs and the Director of Nursing were terrible to deal with, had very bad attitudes towards the patients, and treated family members rudely. And this is a "5 Star Medicare Facility" - the name is Las Villas de Carlsbad in Carlsbad, California.
By the time he left the SNF, I had been told he wouldn't be accepted in any Assisted Living Facility, and needed to be in a Memory Care Center. Once I moved him to the Alzheimer Care Center, his quality of life improved markedly. Everyone there was trained to work with dementia patients. As far as being up all night, they told me that they strive to make their Center as much like the residents' homes as possible. Since people can get up in the middle of the night to have snacks or watch TV at home, the staff had no problem at all letting residents do it there. I placed my husband under Hospice care in December, and he stayed under their care until he died on March 30th of this year. Even though he was under Hospice care, the staff at the Center still gave him as much attention as ever, and took full responsibility for his daily and nightly care. The name of the center is Silverado Senior Care in Encinitas, California. Their philosophy is "Love is Greater than Fear" and I saw that philosophy embodied in every single member of their staff, from the housekeeping crews to the top Administrator. At one time or another, I saw every single Administrator working directly with residents, feeding them, visiting them, toileting them. It was wonderful to see, especially after the terrible treatment my husband received at the Skilled Nursing Facility.
dellmc53, I could have written your last post. I, too, was obsessed about how this happened, when he was fine not that long ago. I still obsess over it now, after his death. And a lot of it in my case is denial. He wasn't fine. He hadn't been fine for a long time. But still I ask, How did this happen??
All I can tell you is that the very worst part of my life, bar none, was the first few months after placing my husband. I seriously worried about suicide, I was so utterly sad and anxious and depressed all the time. When I wasn't worried about suicide, I was worried that he would outlive me. It seemed impossible for me to continue living with so much pain. As soon as I would start to feel some sense of relief, things would change and he would decline.
As I've said elsewhere, the pain I feel now that he is gone is horrible. But it is not as horrible as that pain of the first few months when he was in residence. It seems I actually was doing some "pre-grieving" at that time.
I know it is terribly painful. The only place I ever found any understanding and relief was on this website. I found that even the wives I met at my husband's residence didn't want to talk too much about their emotions. It's different here - everyone understands.
Joni, my husband is in a Dementia Facility here in Mpls and he receives the same quality of care as yours did in the Silverado Senior Care - in fact, I could have written your post about his wonderful care. He declines (it seems) weekly, so I'm constantly having to come to terms with his downward turns. I too cry all the time but, as CO2 said, tears are good. It relieves that pent-up anxiety and grief.
My peace comes with my belief that he is in wonderful hands there. The management constantly struggles with shortage of staff and that sometimes results in his caregivers working double shifts, but they are wonderful and love the residents. I try to bring in goodies once in a while for them and to let them know how much I appreciate their attentions to him and the other residents and how much I value them.
We are in a partnership with the facility; I do whatever I can and they do whatever they can. We struggle and constantly adapt to residents' continual changes and we do the best we can every day. that allows me to leave him there without guilt.