Myrtle, you husband sounds like a very lovable character. I'm with you about raising the issue in a way that just points out the problem. The problem here is always short-staffing. FYI, I finally, with the consent of my lawyer, contacted the newspaper, explaining my situation about the PSW and illegal videotaping. I couldn't bear to face another year or two of legal wrangling to find out what had happened ... it was just very stressful. The newspaper reporter has lots of sources, and he phoned this morning to let me know that the PSW was terminated; that they had requested her cellphone and SIM card, which she refused, and the Union is not sure if they will support her before Arbitration. This was such a load off my mind and shoulders, as I know she is not working there anymore, and can't subject other residents to harm. I think my husband would approve. I stressed to the reporter that the Home and the staff were very good to my husband, as was the Administrator, and hopefully that will be noted.
marg78, Good for you! It's clear the system is not set up for the benefit of people who have been harmed by these caregivers. I'm glad the reporter was able to get more information and I hope the newspaper's involvement prompts some change.
As far as the med mix-up goes, you are absolutely right. The problem is short staffing.
ky, my experience was my husband was in an assisted living locked dementia unit. Three months before he passed they called and told me I had to move him to a nursing home because he needed more care. So I have had experience with both. I do,believe he got better care at the assisted living because the unit was smaller and he did forge a relationship with one of the caregivers. The nursing home was much larger and one caregiver was responsible for an entire wing. They were not able to handle his behaviors and fortunately hospice got involved and his care improved. The thing is what I learned is that nursing homes like patients who sit in wheelchairs all day. My husband was ambulatory and that was a problem because of inappropriate urinating. There are very few nursing homes who,will,accept patients with behavioral issues. You need to find out up front what behaviors they will accept. Because of my ignorance I never asked the question when he was placed. He ended up in the geriatric psych unit of,the hospital trying to find medications that worked. He was there 2 weeks and died 3 days after discharge. The last three months were shear hell because of all moves. You want to find a place that will keep him until he passes because moves are horrible,when you get to,that point.
Ky caregiver, my DH lives in a Dementia Assisted Living facility. They do not do Nursing Home care so my DH can stay in that facility until the end of his life unless he would require invasive procedures that only a Nursing Home can provide.
I strongly believe that this facility is the best possible place for my husband. Because it is only for those with dementia, the mission of the facility is to care for the body as well as the spirit of those with these diseases. They understand the challenges that the residents face and know how to respond to behaviors, how to engage them, how to redirect, how to create a loving and secure atmosphere as our loved ones go through the different stages of this disease.
I would be interested in learning of the experiences of people who have their spouses' laundry done by the LTC facility. I have been doing my husband's laundry at home and carting it back and forth.
Myrtle, We had no problems whatever with the laundry that was done at the LTC. It's quite a chore for you to be doing your husband's laundry when you are so busy, and you are paying the Home to do it.
My experience in the both LTC facilities was that my husband's clothes and a body pillow went missing, never to be seen again. His room was heated poorly, and one horrible night he was without a blanket. I had provided a special down comforter, and it disappeared I took home all clothing that needed to be hand-washed, but sometimes wasn't quick enough and ended up with shrunken sweaters and vinyl shirts. It was not unusual to see some other patient wearing my husbands' clothing. I think you can only do your best. With that many staff and that many patients, it's a crap shoot.
I do my husband's laundry for several reasons: 1) I don't like the idea of co-mingling residents' clothing, 2) like mary75*, some things went missing while others were heat damaged, 3) while looking for a missing item, the aide took me to the laundry room. Both the washer and dryer were packed so tightly that there was no way those clothes would ever get clean 4) I guess it is one area that I can control, and 5) I read an article about what happens when clothes are washed - basically all of the germs are redistributed throughout the load - which made me even more OCD about co-mingling clothing.
Several family members of residents who do the laundry have soft-sided zippered laundry bags on wheels that they use.
The Audrey at DH's residence goes out to commercial laundry. Al close save heat pressed name on each item. Each floor has a different colour. His clothes are very clean and he has only had one item misplaced and the wife foundation her hubbies drawer returned it to my DH. There are two hundred and forty residents so I guess we are doing well.
Thank you all for sharing your experiences. Jazzy, where did you get the name labels that you heat-pressed onto Kevan's clothing? I could not find any so I just wrote his name with a laundry marker but I would prefer labels.
It is done my staff in the laundry room. I have to hand in all new clothes to the PSW and it is put in a bag with his name on it and they send it to labelling. It can be removed with the same heat machine. Different colour for each floor.
All clothing in my wife's ALF is tagged with the resident's name (when I bring her new clothing it must first go through staff for tagging). My wife used to do her own laundry at the ALF, then I started doing it and now a nurse is doing it. Top staff said not to bring in any clothing requiring hand washing or cannot go in the dryer.
I spent three hours on New Year's Eve texting back and forth with the ward nurse on Kevan's floor. Two problem's set him off. First one is when he gets up in the night the staff always leave the bathroom light on" shared bath". With fronto they are either spenders or hoarder. Kevan is a hoarder so this is upsetting for him. They are wasting his rent money. He then tried to find the PSW who did this thing but she had been moved. Her name was still in the board for his area. He finally found the right one, but no name tag. He was so upset he went back to bed. I had contacted the ministry to see if it is a law or just a suggestion. She said if it is in his care plan they have to wear it when approaching him. I email them to tell him this was to be put in his care plan book. Well that sure shook things up. They then found him and asked him to report all staff that don't have a name tag on. He found four at lunch but couldn't remember their names by the time he got down the hall to his room. Back into bed all upset. I called to see how his day was. He was in tears. I told him it was not his job so don't do it. I then emailed his nurse and informed her that this is not his job. They have staff that are there to do it. I just got an email back that said " thank you" It never ends. Why do they expect him to do their job? I am concerned that they just don't really see his disease. I guess it's time to go over his care plan with them again. Never ends. He is now having trouble with his solitaire game on his computer. Just doesn't see many of the moves. My heart breaks watching this happen to him. He is not as volatile and now they have to call me if up he is.
Jazzy, My heart goes out to you in your journey. My husband did not have fronto but I can so relate to your pain as you watch over his care at the facility and see the decline knowing there is nothing you can do. Much like you, I was always "checking" to see what was going on with him and if the staff was caring for him in the best way possible. It was so hard because I think we all deep down feel like we know them best and can care for them best but of course we cannot--just because we are caregivers and must take care of ourselves if we want to go on with our lives in any way, shape or form. Know that he is getting the care he needs at this time--it may not be perfect--but we as caregivers must give up the idea of perfect care because it does not exist. What I did that helped is I forged a pretty good relationship with one of his aids and she was always very honest with me and did give him excellent care. The other caregivers were so so but she was good and I am grateful for that because she helped me knowing that she was caring for him in a heart felt manner.
Jazzy, I get SO frustrated when I read that staff asked Kevan to keep track of who was wearing name tags or not. Grrrrr.....
I suspect you are exactly right in that the staff just don't get FTD. That was my reality was well. Our guys "look normal" in many ways. Asking them to take responsibility for things is simply a time bomb. They can't manage it. Simply can't. They both try and the end result is never good.
I am curious why the staff have to call you when Kevan is up? Is this something you want or they asked for?
On another note, you are so right CO2 "...perfect care...does not exist."
Sorry Katherinecs I mistyped. They have to call me if he gets aggressive or acts up. As I found out that some staff are not recording these incidents. I guess it is to protect their a**es. Your right, they don't understand fronto and fronto with bv which is a behavioural variant that is not good. He just can't control the action. He just can't and so they have to learn to deactivate, de escalate and distract. I just keep going after them. I now only contact them by email so I have a record of everything I say to them and what they say to me. I think they have now realized that I may be talking to someone who knows all the rules and they are getting concerned. I am not sitting back anymore. He has always been the center of my world. I can be a bad enemy to make.
All staff should have name tags on all of the time. I am sure this is The floor in addition to being a rule there. Perhaps they were trying to make him feel involved or feeling he could do something about the situation and he thought this was to be his job. My wife has ftd and I often have to investigate what she says and how she misinterprets stuff. I am lucky not just that her staff is good but also there is a nurse she adores and the nurse watches over her (this nurse gave Leannah a Xmas present).
I wish the staff at my husband's LTC center wore name tags. They wear ID cards but the residents are unlikely to be able to read them. They dangle from a lanyard and are not easily visible, since they are sometimes facing backwards.
Myrtle, how is your husband doing? I hope things are settling down for both of you. Please let us know.
About "The life-changing magic of tidying up", thank you for that suggestion - I got the book and am 'working' it. Easier for me to do this now, because I have more time. I still have a way to go, because it is a lot of work, but it sure feels good to look into your closets and feel the 'spark joy'. (She's in many places on the internet, but it's not as good as reading the book.)
marg78*, Thanks for asking. He seems to be doing better. He has not become aggressive again but the other day he was too agitated to eat his supper (except for the dessert!) so the nurse gave him a PRN Ativan. Yesterday I took him to the doctor. He cooperated with the exam and enjoyed the outing, even though I did not, since it was bitter cold.
I read the article in the Free Press. Am I the only one who questions the writer's use of the word "violence" to describe all varies of aggression in dementia patients. The word may be appropriate in some circumstances but I question its use when the patient does not intend to hurt another person.
On the subject of organizing, I'm would love to get your thoughts on some of the issues raised in the book but I don't want to hijack this thread so I'm going to either find an already-existing thread or start a new one but I won't get a chance to do that until tonight. Stay tuned!
Well Myrtle, I can certainly understand your disgust. At least your poop was hard, solid, dried and whatever. When my husband was in rehab for his broken knee I opted to do his laundry so they told me they would put his dirty clothes in a plastic bag in his closet and I could take them home to wash. So after the first night they tell me he had a bowel movement (which he hadn't had for 3 days) and that he pooped alot but was fine. OK. so I bring the clothes home to wash and to my amazement the 3 days worth of poop was in his pj pants with his other clothing. No one told me that they put the pants AND poop in the bag of dirty laundry; I only found out when I took the clothes out to be washed. Thank God I had kept his aide on while he was in rehab...he took out all the clothes, put them on the driveway and hosed everything down until there was no poop or poop residue on the clothes. When I spoke to the aide the next day as to why she didn't at least empty the poop into the toilet bowl she siad "that's not my job". I asked her if the NH was washing his clothes would she have emptied the massive cow flop into the toilet and she said again"that's not my job. My job is to change him and make sure he's clean (he wasn't)."
I guess I'm trying to give you support and let you know it could be worse.
Last night I was watching the news, which had an interview with Diane Rehm, who hosts a radio show on NPR. I am not familiar with her but others on this site have mentioned her. Her husband had Parkinson's disease and before his death, he was in an ALF. Diane Rehm made a statement to the effect of, "I think that every spouse who sees another go into an assisted living facility feels that guilt."
Well, my husband is not in an ALF but he is in a dementia unit and guess what? I do not feel guilty. I have done nothing wrong. My husband is happy. He gets better physical care where he is than he would get at home and he has better socialization. He has made friends with some of the other residents, who are just as dotty as he is. His unit has daily activities (group games, music, therapy dogs, etc.) to amuse him and the other residents. So he is better off there than he would be here. My heart still aches, of course, but that is because I miss him so much, which is not to be confused with guilt. Am on the only one on this site who feels this way?
Myrtle,so glad you entered this comment.My husband is in a skilled NH, He is happy and well cared for.Everyone talks to him, families of other residents are friendly,make him smile. He is non verbal but understands.When I take my therapy dog he holds the leash while I push his wheelchair and we pop in and out of residents rooms. It's a little like the "CHEERS" show, where everybody know my name.Like you, I do not feel guilty or depressed that I had to place him.I could not give him this level of care at home.
My husband’s facility has two secure dementia units with 25 residents in each. The residents take their meals in dining rooms that are part of each unit, not in the main dining room. For about nine months, I’ve been timing visits so I can help my husband with supper. Supper is always served with soup but the only spoon provided is a teaspoon, which must serve double and even triple duty - for the soup, often for an entree or a dessert, and to stir milk and sugar into coffee. You can image the mess when the soup of the day is corn chowder and the dessert is banana pudding. Ugh!
My complaints to the nurses have fallen on deaf ears, so last week I dropped a written request for soup spoons into the administration's suggestion box, explaining the problem. Well, today a response granting my request was posted on the bulletin board and a soup spoon was included on every supper tray delivered to the dementia units. I know this is a small thing but to me it is a huge victory.
Myrtle,I've had this same fight at Sonny's NH.It gets taken care of for awhile and then back to same problem.I feel like I am always requesting clean silverware..What is it with silverware? Had a problem when my children were in school,They were expected to eat everything with a spoon.Had to go to the school board over that.
Not sure where to post this. . . . My husband has worn a support stocking on his right leg for about 20 years. It seemed to prevent any ankle swelling. When he went into LTC, they put them on both legs, probably because it was easier. All was fine for two years but about a month ago he started to gain weight fast and two weeks ago, his feet and ankles swelled up to the point that he could not get his shoes on. I asked if any meds had changed and learned that the dosage of Depakote (which was very low) had been increased. I looked up Depakote and under the first-listed side effects it said to tell your doctor immediately if your feet or legs swelled up. So a week ago I left a message for the doctor about this and he said he had never seen such a side effect and that the dosage was low. So he prescribed hydrochlorothiazide and elevating the legs. The problem got worse. Yesterday, I left a message demanding that they come up with an explanation for why, after two years of walking around the unit like the Energizer bunny, this man is unable to get his shoes on. So today the doctor asked the psych consult service to look into whether this might be a side effect of Depakote. He also ordered lab tests. I don't understand the doctor's lack of curiosity about the cause of the problem. It seems like a mechanic putting air in an deflated tire without first checking it for leaks.
Myrtle, I don't think it's lack of curiosity, it's basically just laziness. If they don't know something, they just shrug their shoulders, ignore it or pass it on to someone else. I've noticed it with older doctors as well as some younger ones.
My son very bad Lymphedema in both legs from the knee down including his feet, one worse than the other for a couple of years. The swelling has gotten worse the last few months. He has seen doctors during this time and since he does have hypothyroidism, they blamed it on that, ordered hydrochlorothiazide and ignore it.
I finally made him go to the ER a couple of weeks ago. They referred him to a Lymphedema Clinic and they are working on it.
Do a search on Lymphedema. You can get it in different parts of the body and it can just happen for no reason. It may not be the Depakote. Why would he ask for a Psych consult?
Thanks redbud, The doctor asked for a psych consult because a separate psych service prescribed the Depakote. He may not want to change that med without their OK. I know it might not be the Depakote. I would prefer that a medical professional investigate the cause but when the doctor did not even try to do this, I had to resort to my own internet research. I just looked up lymphedema (which I only know in connection with cancer) and I wonder whether that is one of the things they are looking for in the lab tests.
myrtle, ankle swelling like that can sometimes be caused by heart failure. Lymphedema can be a symptom of HF. While you may not want extensive testing or treatment other than comfort measures, there are some basic tests that can be done. An echocardiogram is non-invasive and with a good tech can be done rather quickly.
If your husband is a DNR, that may be influencing how aggressive the doctor is. Just a thought. I hope you get some answers soon. This can be so frustrating.
Hi marche, I had thought of heart failure -- that was the cause of my mother's ankle and foot swelling -- but did not know how to diagnose it, never having attended medical school. I will ask them about this, too. My other thought was that this might have something to do with his aneurism, a AAA. Maybe it is leaking. My husband has a DNR and a bunch of other non-treatment orders but I do not see how that affects the decision not to diagnose. You are right that I don't want extensive testing but if a diagnosis can be made without undue distress or great cost, we would know whether treatment would improve or worsen his quality of life. I hate to see him lose his ability to walk, since he gets so much pleasure from it.
**edited** Just after I posted this, I got a call from the facility. The swelling has increased, his skin is shiny (I noticed that last night), and he has started limping, due to the soreness. The doctor is concerned about cellulitis and is putting him on an antibiotic. They just drew the blood. Now that I got their attention, I'll try to back off and let the medical folks do their thing.
myrtle, the AAA could be pressing on the vena cava and causing the swelling. As you can see, there are a number of conditions that can cause leg swelling. It is significant that it is bilateral. Don't back off too far . . . until a few tests are ordered or a doctor actually looks at him, listens to his heart, checks for shortness of breath, listens to his abdomen (aneurysms make noise), checks for pain, and looks for other signs of cellulitis besides the swelling. (I'm not a doctor,BTW, but taught in the medical field - not diagnosing, just giving you some other things to think about).
You are correct about having a diagnosis to help in quality of life decisions. You are your husband's advocate and have every right to ask for medical assessment. In fact, you might ask the facility to have the doctor see your husband and then be there when he comes - try to pin him and them down to a consultation time. You can also ask the doctor to write down for you all of the information that he might be rattling off and you aren't comprehending at the moment. It can be overwhelming if you don't know the jargon. Heck, it can be overwhelming if you DO know the jargon.
marche, I appreciate your input. The doctor comes every weekday but I do not usually visit until after work, so I don't see him. I'm going to find out what time he is coming tomorrow and go over there then. (I also wondered about why cellulitis would appear in both legs.)
I met with the doctor. He said he stopped a blood pressure drug called Felodipine (which my husband has taken for many years) because swollen ankles are listed as a side effect. He said that my husband definitely does not have heart failure (he has no other symptoms) and if the aneurism had grown to the point it was pressing on a vein, he would be experiencing some distress or discomfort (which he is not).
He said that although swollen ankles and legs are listed as side-effects of Depakote, he has never seen this before but he has notified the psych service that prescribed it. When I got back I went on the Depakote site again and saw that “severe weight gain” is also an adverse side effect. My husband has gained 10 lbs. in the last month. I just called the nurse and asked her to make sure to tell the psych person, who is expected to arrive soon, about the weight gain.
Thanks so much for listening to me. It really helps to be able to bat the problem around with people who know what I’m talking about.
Frantic spouse here, just needing to vent. Summary:
Until a few weeks ago, husband (in LTC for 2 years) was fully ambulatory and walked constantly. Depakote prescribed for intermittent and unpredictable outbursts. After Depakote dosage was increased, husband's feet and ankles swelled up and he gained 10lbs in one month. Foot swelling and weight gain are listed as side effects of Depakote, but doctor says he has never seen this side effect. Doctor has ruled out heart failure and aneurism as causes. Husband is now limping from foot soreness and wears slipper socks all day since his shoes no longer fit. I had to cancel his toenail appointment with podiatrist since feet are too sore. Doctor prescribed antibiotic because he suspects swelling is causing infection. Doctor asked psych service that prescribed Depakote to reevaluate him. On Friday afternoon psych service said they intend to continue increasing dosage of Depakote as originally planned and recommended giving husband Tramadol for foot pain.
The medical people have no idea what is causing swelling and weight gain. (Doctor says it is not a serious condition - lots of people get this.) I do not know, either, but I see only one suspect. After hearing psych service's plan this morning, I told unit nurse I wanted Depakote discontinued to see if swelling goes down. In the meantime, they can prescribe something else. Thanks for listening.
Myrtle, I would have done the same. This isn't the first time that a spouse has had to say "no, no more, stop this drug." I'm thinking of Nikki. We do have a pharmacist here on this site, although he hasn't posted lately. I think his name was Marty. You might want to search his posts. He may have changed his posting name following his wife's death, but others might be able to help remember his new name. Some may even have his email address.
We also have a doctor here, Marsh. His wife died and he has remarried, but I see that he posts from time to time. He is very sensible and down-to-earth and had his email on his profile. I'll email him now and ask him to comment on your post.
Thanks, mary75*. It means a lot to me to have a place to express my worries and even more to know that someone is actually reading about them. After I talked with the nurse this morning, she weighed my husband and found he had gained another 2½ lbs. in the last week. The doctor also ordered a BNP test to rule out heart failure. The result just came back - definitely negative. So the doctor is telling the psych service to start lowering the dose of Depakote. I hope we will see an improvement in the swelling. If it is not caused by the Depakote, there are no other suspects. I'll keep you posted.
Myrtle, Mary75 asked me to comment on your problem. Certainly, the depakote must be considered as the cause of the weight gain and swelling since heart failure has been ruled out. I would agree with you that the next step would be to reduce/stop the depakote. There are other drugs that can be used, if necessary, for the outbursts. With Alzheimer patients I feel we should use as little medicine as possible, all aimed at making their life as pleasant as can be. When my late wife died she was only on minimal medicine for high blood pressure and diabetes.
Thanks so much for your advice, marsh. I like your policy of using as little medicine possible. The nurse pointed out that she thinks that my husband's walking is a stress-reducer and if he is prevented from doing that, his behavior might become worse. Makes sense to me. I'll report back after the change has time to take hold.
I hope you are in a warmer place than Maine today! It's snowing to beat the band here in western Mass.
Selling in lower legs is a possible side effect. I was concerned when my wife was put on Depakote (used to reduce her very violent actions and was replacing another medication, not in addition) and I was told by ALF staff that the side effects are well known so they would pull her off of it if any showed up. Fortunately it wasn't a problem for her since she ended up with the maximum dose (which was reduced this past summer when she became zombie like). The psych people treating your husband don't seem to have this attitude.
Here is a page on the side effects. It states to contact the doctor if any of the side effects occur.
Thanks, paulc, what your wife’s facility told you confirms what I thought and what the website says. (That’s the same site I looked at.) Today I leaned that when the doctor told the psych consultant that heart failure had been ruled out, she said she wanted to continue with the Depakote because the symptoms might be caused by another drug. (Depakote is the only new drug he is taking.) She also advised giving him a pain killer to alleviate the pain caused by the swelling in his feet. The doctor did not overrule her. The nurses also told me my husband had gained another pound since yesterday and he had also scratched the shiny red skin on his lower leg and opened up a wound.
I lost patience with the whole thing, so I wrote a letter to the doctor saying that the facility no longer had my permission to give my husband Depakote, although they could gradually reduce the dose, if necessary. (I asked him to decide whether a different drug would be appropriate.) I delivered the letter when I went to see my husband after work.
The nurses seemed relieved - they are clearly worried about my husband. They filled me in a little about the politics of this psych service. They said that the doctor is supposed to have the ultimate authority and they did not understand why he has let this go on for so long. Earlier, I talked to an elder care lawyer and she said that this particular consulting service (along with one other outfit) is in all the nursing homes and ALFs around here and that they seem to have a standard package of drugs that they like to stick with.
Thanks so much for listening, everyone. This has been weighing on me for weeks now and it really helps to have someone to talk to about it. I hope that stopping this drug will work. Stay tuned. . . .
And if it doesn't work they need to try another. It is difficult since it takes time to reduce one drug and introduce another. They may or may not have to wait for another drug until the Depakote is gone, drug interactions is a risk. In fact, the problem you are seeing might be from the interaction of Depakote with another med and the Depakote by itself might be OK.
We are fortunate that my wife's ALF has a neuropsychiatrist on staff so if a problem comes up the doctor can intervene immediately.