Many people think of hospice as a place. In fact, hospice is a mode of treatment that can be done anywhere. In the U.S., in accordance with Medicare guidelines, all initial hospice treatment is performed in the home. Only the 'actively dying' or those with uncontrolled symptoms qualify for in-patient hospice care at a facility.
That's why my home looks like a disaster area. The dining room has been hastily cleared out, its furniture shoved into the living room, which is now uninhabitable. Meanwhile, a warehouse of hospital equipment has been moved in: adjustable bed, hospital table, Hoyer lift, bedside commode, wheelchair.
But it's not the disarray that bothers me. It's Dad. He's out of control.
On this Monday morning, his hospice nurse and I sit on chairs at his bedside. Dad is trying to kick me in the head as he rails angrily about needing to get out of bed. He's extremely agitated and has been this way for the past two hours. The nurse tells me this is called terminal agitation. It's not helpful that she also tells me Dad's is the worst case she's ever seen.
Dad has been severely agitated since Sunday morning. For over 24 hours, Lee and I have had to spend most of our time – day and night – at his bedside, dodging skillfully aimed punches and avoiding Dad's nimble attempts to grab our individual fingers and twist them. He's spat on us, slapped us, pushed and shoved us. He's cursed us, screamed, and hollered. We don't take it personally because it's clear he's not in our reality. We can't figure out where he gets the energy to be so combative for so many hours on end. We, ourselves, are so weary we can barely see straight.
We've pumped Dad full of haloperidol, lorazepam, and morphine – all highly potent anti-anxiety and pain medications – yet still he fights. He needs to be admitted to in-patient hospice temporarily, the nurse says, to get his symptoms under control.
That would be great, I say with relief.
Several hours later, however, the hospice nurse manager phones to tell me Dad will be staying at home. Despite the fact Medicare guidelines state Dad can be admitted under these circumstances, the truth is the hospice provider doesn't actually have a facility to place him in. My anger leaves me temporarily speechless.
And so, Lee and I face yet another sleepless night as we try to stop Dad from getting out of bed and hurting himself. The hospice provider refuses to assign a nurse overnight, so it's up to us to deal with this psychotic, 220-pound man. Sometimes his behavior is so disturbingly violent I weep quietly at his bedside. I worry he'll not only hurt us but himself, as well. Lee and I feel totally unequipped to handle the situation, but we're on our own.
I feel our hospice provider is failing us, but what can we do? It's 2:30 in the afternoon, and Dad is getting wound up again after a few hours of sleep. It's time for me to force our hospice provider's hand.
I am helping an 85 year old woman with the care if her bed-ridden 87 year old husband. I was told he has dementia, but I think there is more than that going on. I did talk his wife into contacting Hospice when he went from semi-ambulatory, to completely unable to walk. He is now in diapers, needs to be fed, and gets very agitated quite frequently. Hospice has been wonderful! This is the same Hospice group I used for both my parents, and I was familiar with their expertise. There are children, but they have jobs, families, etc and are not able to help Mom out as much as I feel they should. I lost my job recently and am therefore more available. However, sometimes I feel I am being taken advantage of. I did not know this family before learning of their need through my Church. I would love to get Mom out of the house once in a while, but nobody ever seems to be able to take the time to make this possible. I am very concerned for her mental and physical health. Any suggestions or words of advice for the wife, who is basically the primary caregivers?
It is perfectly acceptable to have your loved one taken by ambulance to the nearest general hospital in most cities due to being unable to care for them at home. There at the hospital, your loved one can be admitted and behavior stabilized. The medications you mentioned can be helpful and sometimes hurtful. Anti-agitation treatments can sometimes cause the symptoms they're trying to treat. Morphine can make many elderly people crazy. disturbance in day and night sleep cycles; too much stimulation in the environment; and playing catch up with medications can cause dangerously agitated to scarily comatose cycles that are impossible to deal with effectively in the home environment. Although the hospital will want to secure placement as soon as possible; and although it will be very important to be clear that you want the behavior treated without aggressive life saving interventions, a short hospital stay with specialty evaluation to treat agitation is absolutely possible, whether the hospice has an inpatient facility or not.
My mom is currently with a hospice, which has verified my thoughts on the medical community at large...incompetent. I am completely disgusted with the lack of urgency to solve any oncoming problem. The legs are filling up again...they wait until sores have arrived, legs are weeping. Let's wait for the disaster then try to fix it...stupid. I hate the medical field, as well as most the doctors and nurses in it. They need a better education - I wish there were more integrative physicians and nurses who possessed authentic training in real nutrition, not the crap they learned in their one nutrition class that teaches the old pyramid BS. Don't get me wrong they are NICE ENOUGH, but they have lost , or perhaps never had, any true idea about HEALTH. They are trained to treat symptoms...and give you a pill. Also, where does all that money go that hospice receives, especially since most of them are nonprofit?? Is there some head honcho receiving a huge nonprofit salary? Do they receive bonuses for keeping the expenses down? They made me buy the ASPIRIN that she is REQUIRED to take...aspirin. I can't wait to read your "Showdown" story, as I am at a showdown point! A few weeks ago there was an article about the director of the hospice where she actually said she had helped do dishes with a little girl...the day I see this woman or any of her staff do someone else's dishes I will die of shock! Her ego was everywhere in the story...gag!
as a palliative care social worker i am very honest about the type of care offerred in hospice and the very real restraints placed by regulations. hospice is not a magic bullet!
I don't know where you live but my 87 yr old father with Louibody Dementia (Dreams and Reality are the same) is also on hospice. I looked around at a few different hospice companies and not only did I hand pick the company wanted, I especially hand picked the RN nurse I wanted. So far it's worked out well for us and yes Dad has had his anxiety episodes, maybe not to the level you did but ours was a pretty good one in it's own right, as we were moving Dad across the country by plane his meds wore off and he got very forceful on the plane at 35,000 ft between Dallas and Tucson, not combative but he was doing everything in his 87 year old 210 lb power to be forceful and to get to the cockpit because he didn't like the way the pilot was flying the plane, (Dad use to be a pilot himself). I dont' claim to have all the solutions but I'd definitly be shopping aroiund for a different hospice provider. I think thats where we made our money, we learned that all Hospice Providers are not created equal. Hang in the Folks, your not alone in this personal battle, there are a lot of us fighting our own individual battles, one at a time. Good Luck Cheers, Lancer in Tucson
Hugs and kisses to all of you who are suffering with in home care OR hospice in a skilled nursing facility. My husband had excellent care in a skilled nursing facility. I had a outside hospice team that worked with him and me. We had a special hospice doctor who could be notified when meds were off. She would contact our neurologist and together make better decisions. He also had Lewybody which was not discovered until the later years. Up until that time he had been called Alzheimer's. There ARE better hospice groups out there. I advise anyone considering hospice to interview more than one before choosing. During that process ask lots of questions. Check the answers with your neurologist or doctor to make a good decision. My husband died in hospice care and even that experience was a good one.
Depending on the city you live in, there's almost certainly an in-patient hospice unit attached to a hospital somewhere near you. It sounds as thought the hospice provider you've chosen doesn't have a contract with that hospital. In short, you need to call the in-patient unit, ask which hospice providers they are contracted with, and immediately contact that hospice provider, explain your situation, and let them know you wish to revoke your dad's hospice benefit with the other hospice provider and get him on service with them and get him admitted to the impatient unit asap. I've ran a hospice and know how they work. They obviously are more concerned about a" live discharge" than doing the right thing for dad. I take this all back if there truly isn't a hospice impatient unit in your area. The "in-patient unit" the hospice has been referring to is simply a nursing home bed, and very few nursing homes staff RNs 24/7, which is a requirement in order for hospice to bill CMS for the in-patient level of care. Hope this helps and good luck.
My mother-in-law of 86 years collasped last Sunday and was rushed to the ER. After refusing all life saving measures, she was admitted to Hospice. This was the first experience that I have had with Hospice care. It has been a real experience. The care she was given was excellent. The care and concern for my husband and me was and still is unmeasurable. My mother-in-law has greatly improved and will be coming home tomorrow. Unfortunately, she will be returning not in the state she left. She is more frail, not eating (which is OK), and she will not be able to do alot of the things she was used to doing. I know once she is home, she will try. But she will be where she wants to be: HOME, and still under Home Hospice care. Case workers have helped me get all the equipement she will need. It has relieved some of the stress, althought I am still concerned about having her home. I have to find a caregiver for the day time only, my mother has been diagnosed with cancer, and I now have to help care for her in another town. I am not sure I can manage both.
Especially Haldol. That is nasty stuff.
Your hospice provider is certainly failing you! I lost my dad three days ago. He was acting out many of the same behaviors you dad is. Fortunately, he was admitted to the hospice wing of the VA hospital in a neighboring town. They were fabulous, carefully balancing the amount of time they spent in the room with my time with him. I am guessing the hospice people don't want to deal with your dad, so are giving you false information about whether he qualifies. Another reason I believe you aren't getting the care you deserve is that my father had just spent two months in a hospice house with less visibly terminal symptoms, but was still admitted there following dismissal from the hospital. Granted, after two weeks his status was changed to resident care, and it was extremely expensive. We were very lucky he got to stay, because there was no other place for him. Hang in there. He will be gone soon, and you will forget all the difficulties. But do pursue what your rights are.
Dear Elizabeth: I have read your blog weekly, but missed the last two entries until today. I am shocked and saddened to see how quickly things have declined. My heart goes out to all of you and I wish for things to improve now. I have my mother who is 84 living with me, and seeing what can happen and how quickly has really opened my eyes. I send you hugs and prayers. Chris
There is a "5-day respite" benefit under Medicare. Ask your Hospice Social Worker about that. It appears he cannot control his anger impulses, normal behavior under dementia-I bet he was a 'fighter' before his setbacks. I used music from Mom's era as background, seemed to help. Reading to her calmed her down sometimes. The nurse should be checking for impacted bowel and urinary tract infection. Get your Hospice doctor involved. It's the squeaky wheel gets the oil. Best to you.
Oh, Elizabeth....I am so sorry about all of this. I had not read your blog for a couple of weeks (due to health issues of my own ) and am so saddened to read how quickly things have turned for your father. I know all too well how hard this is for you and Lee. I experienced the same events with my mother-in-law, with first her falling and then, when she became bed ridden, the agitation directed at me for not letting her out of the bed. She had been falling for quite some time before she moved in with us and continued to do so after she moved in. Until the last week or so that she was mobile, she would not use her walker unless I repeatedly stood in front of it and her and told her that I needed her to use it so that I wouldn't have to worry about her falling. A week and a half before she became bedridden, I went to visit my son and my only grandchild for the grandchild's first birthday. I was gone a week. I left her in the care of her daughter (she flew in from out of state to give me that break!) and my husband. I had been keeping the daughter well informed as to how her mother was doing. Left specific notes and thoughts. I don't believe the daughter thought her mother was as bad off as she was. She took her out shopping every day while I was away (way too much for someone in her state) and she fell in her bathroom a couple of times. The last time was the morning of the day that I came home. I knew when I got home that things had changed quickly for her. She could barely walk, she wasn't her "normal" self in that she didn't greet me or smile at me when I came in. I had her hospice nurse out the next day and every day after that, until her passing almost 2 weeks later. We were so hoping it was just exhaustion and that she needed to rest, especially since the last fall was particularly harsh. No broken bones, but, so many bruises. When she reached the point where she could not stand on her own at all, I placed her in her hospital bed (thank God we had already turned our sun room into her living area, with space for the bed!). She had a separate bedroom suite up until then. We still thought she would bounce back. The day after she went into the hospital bed, she kept trying to get out and became very agitated with me when I insisted that she needed to stay there to regain her strength. Two days later, we had to put her on morphine, as well as a couple of other meds. Her regular pain meds no longer worked on her. That was when we knew she wasn't going to come back to us. Please, please, please do not take the agitation personally!! He is not himself anymore...probably hasn't been for a long time, but, even more so now. At this stage, they are much more childlike than like an adult. While they may be expressing their anger at not being allowed to get up, I suspect that it is much more than that. I suspect it is anger over what is happening to them, mentally and physically. Frustration over not understanding what is happening to them. What has the hospice nurse said to you and Lee about his condition right now, other than she's never seen anyone as agitated as he is?? Is he still eating or drinking at all? If so, then I agree that you need to push the hospice group and have the doctor come out to assess him. The medication truly could be making him more agitated. Ask to have it adjusted. Unfortunately, things do not sound good for you right now, in so many ways. I am hurting for you, Elizabeth. Please know that you have continued to be in my thoughts and prayers throughout the beginning of your blog. Your courage in writing this blog has helped so many people going through or who have already gone through such difficult times with their loved ones, myself included. If I can be of any help, please do not hesitate to message me. Again, please know that through your blog, there are so many of us out here that care about you and what you are going through. You are not alone in this. {{{{hugs}}}}
Elizabeth, Something you might want to consider is whether you father's diagnosis is in fact Alzheimer's or if it might actually be Lewey Body Dementia. Almost all of my mother's brothers and sisters (7 out of 10 of them) developed dementia. My mother has been diagnosed as having LBD but the others were just lumped into a dementia/Alz category (which was very bad because the meds used for Alz can and usually does, severely worsen LBD patients). Few doctors even know about LBD let alone how to treat or more importantly, how NOT to treat this nasty disease. You can read more about LBD symptoms at: http://www.lbda.org/category/3438/symptoms.htm and LBD treatments at: http://www.lbda.org/category/4132&cfid=16971864&cftoken=81642809/treatment-options.htm A few months ago my mother had emergency surgery to remove a foot of her intestine due to a blockage and she's unfortunately subsequently dramatically gone downhill across all her cognitive, balance, and aggression symptoms. I recently had to start her on Seroquel because her "moods" were getting too much to cope with. Having mobility disabilities myself and being her sole caregiver without any other family to assist with her makes it difficult to say the least when she gets combative. Unfortunately there was no other feasible option. But knowing what I know about LBD, I did not want to have her possibly over medicated immediately off the bat, so I opted for a much lower dosage of a 12.5 mg morning and evening amount as opposed to the 25mg, 3 times a day that the doc prescribed. It's not taken all the aggression away but at this point it has blunted it for the most part. She may end up having to get to the dosage level she was originally prescribed, but I'm going to hold off until all other options have failed, to hopefully avoid as much as possible the severe drawbacks of using neuroleptics. As explained on the Lewey Body organization's site, there can be severe consequences to using commonly prescribed Alz drugs on LBD patients. From the sounds of your father's symptoms, he may experiencing those problems. ------------------------ "Neuroleptic Sensitivity Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects. WARNING: Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.) Medication Side Effects Speak with your doctor about possible side effects. The following drugs may cause sedation, motor impairment or confusion: Benzodiazepines, tranquilizers like diazepam and lorazepam Anticholinergics (antispasmodics), such as oxybutynin and glycopyrrolate Some surgical anesthetics Older antidepressants Certain over-the-counter medications, including diphenhydramine and dimenhydrinate. Some medications, like anticholinergics, amantadine and dopamine agonists, which help relieve parkinsonian symptoms, might increase confusion, delusions or hallucinations. NOTE: Be sure to meet with your anesthesiologist in advance of any surgery to discuss medication sensitivities and risks unique to LBD. People with LBD often respond to certain anesthetics and surgery with acute states of confusion or delirium and may have a sudden significant drop in functional abilities, which may or may not be permanent. Possible alternatives to general anesthesia include a spinal or regional block. These methods are less likely to result in postoperative confusion. If you are told to stop taking all medications prior to surgery, consult with your doctor to develop a plan for careful withdrawal." ---------------- Maybe finding a doctor in your area that has Lewey Body Dementia experience might be a very worthwhile thing to do even at this late stage in his dementia. That doctor may be able to assist in determining if your father is in fact affected by LBD and if the drugs hospice has him on are worsening his symptoms rather than helping them. Just because hospice wants him on it doesn't make it the right thing for him to be on. While knowing if he has LBD or not won't cure him, it could result in a huge difference in the quality of life for both your father and your family during these final days. My heart goes out to you. I sincerely hope that you'll be able to soon find a solution to make this terrible time somehow less traumatic and stressful for all of you.
Elizabeth, I read your entries every week as I find much to identify with, living with my 84-year-old mother with dementia. I am so sorry to read your latest entry and see that things have declined so rapidly. It certainly sounds like you need to contact a different Hospice provider -- do you have another in your area? Thinking of you and sending my prayers.
I have to agree that a lot of the meds out there are not for Alzheimer's patients. My mom had horrible problems with a lot of the meds they have tried to give her over the last few years. Most of the ones that would knock you or me out just hyped her up! We placed her in a geri-psych unit about a month ago and they kept her for 2 weeks and worked on the right "coctail". All the difference in the world. Elizabeth, I know this won't help your dad but still the psych unit at you local hospital should be able to help. My thoughts and prayers go out to you, Lee and your dad.
1) if you cannot handle him through the night, for heaven's sake don't be martyrs. CALL 9 1 1. He needs admittance to the geriatric psych ward if he is in danger of harming himself or others... 2) GeriPsych will hold him and, in concert with his neurologist, will work to determine what combination of meds he needs to enable to attain the ability to be COMPLIANT - a necessity for ongoing home care, or admission to most care facilities... 3)Anti-psychotics. Talk to your father's neurologist and make sure these are considered as part of the arsenal. They work for a LOT of people. 4) Once he has become COMPLIANT in the GeriPsych ward, they will talk with you about options - returning "home" with you, or "placement." ~~~~ From there - you're on your own. My mother has been in my home for 5 1/2 years. She was agitated at first, but the right "cocktail" took care of the problem. *** (If you had a child or normal adult behaving in this manner wouldn't you call 911?) Hospice will have its role to play further down the road, but at THIS point in time - CALL - 9 1 1. That's WHY all these services exist... Good Luck!©suzannemcable.07.23.2010
The terminal agitation is very disturbing. We were blessed that my husband was in the hospital in the palliative care unit when hospice care was added. The staff did a wonderful job of managing his agitation, although it was not without its challenges. They kept tweaking his meds until the right combination of drugs calmed him down. I can't imagine dealing with this at home without an experienced hospice nurse. My heart goes out to you.
Wow. I am providing 24/7 care for my 85 year old mother-in-law. From everything I read on the subject, she is in the late stages of dementia. After reading this blog, I consider myself lucky that she has not displayed any signs of agitation. In fact, she is fairly comatose (sp?) at this point. I am calling in hospice because I need help and guidance on what to expect next. My husband and I are in this alone and we need all the help we can get just to know that we are doing everything correctly and giving her the best care we can. Eating has been a real issue over the past week, as she clamps her mouth shut and I have stressed about her getting enough nutrition. I have started giving her baby food so I feel better that at least she is getting some nutrition. Even though it is tough getting it in her mouth, she does seem to like it once it is in there! Thank you Elizabeth and all of the posters on this subject. Reading your blogs have been a real inspiration to us knowing that we are not the only ones caring for a loved one with dementia. God bless all of you!
Oh, this so heartbreaking. Sending love to you and your dad at such a difficult time. I have had clients with such positive experiences with hospice and others very difficult, painful experience. Caregiving is such a draining role.
My grandmother and mother both experienced agitation while taking the same meds your father is taking. Once the meds were stopped, they were back to their old selves. Please talk with his physicians. After reading the other blogs, I am going to have to really research hospice. I did not realize how quickly situations change until I started following your story. My 86 year old mother-in-law, who has Alzheimers, has been with us for 17 months now. Recently, she has decided she's not hungry any more, so trying to get her to eat is hard. Her weight is dropping. And I feel helpless. Following your story has given some insight as to what we may heading toward. I wish I could reach out and give you a hug. My prayers are with you and Lee.
It seems I have not known what I was talking about and for that I'm terribly sorry. I have never had hospice in my home, but my sister-in-law had them when her grandmother passed, and my grandmother had them in her assisted living before she passed. I thought they were really great. But if they were, you would not be going through what you are going through alone. I'm so sorry for what you are going through. Morphine can cause agitation, this I can attest to as I have seen it myself with my dad and my late father-in-law. Was your dad more agitated before the medication or after? Can he be given something more sedating? I don't know what to say other than I'm thinking of you and hoping for some relief for you soon.
Hospice does have it's good and bad features ---- some is the system and some is the individuals that provide service. Like any organization sometimes you have to kick butt! I have had some dealings with hospice --- with friends and family --- the family is responsible for the patients care. We had my father-in-law in assisted living. When he fell and broke his hip --- hospice required we sign him out of the program inorder for him to be treated in the hospital for the injury. Unfortunately, he passed in the hospital, but had he not we would have had to sign back into the program. So yes, you can sign them out and in to the program depending on the circumstances. A couple of years ago, my brother had a massive stroke and had to undergo emergency brain surgery to mend a rupture. When he came out he seemed fine but after a couple of days he began having pyschotic outbursts. Many of the same things you are experiencing with your Dad, I experienced with my brother. He was placed on Abilify, Lorazapam, Haloperidol --- to help manage the pyschotic issues. The doctors played with these medications for weeks before he was released home and after. These are some powerful drugs --- and there are some serious side effects too! I am not a medical person --- I have just read a lot as the need has arisen -- I would encourage you to get on line and read about these medications too ( in the few spare moments you have). Bottomline is Abilify and Haloperidol can cause agitation and constant restlessness in the patient. The medical professionals were ambivelent about taking him off the medications. We insisted! Like you we felt we were walking on eggshells -- trying to keep the agitation to a minumum. We hired a full time 24 hour care provider in the home to watch and help manage my brothers needs. This lasted about 5 weeks until, we had finally weened him off this "anti-pyschotic" cocktail and could be assured he would not cause himself or others harm. (Note: generally the medications have to be reduced in increments and not just stopped.) During this time the medical professionals told us--- that if he had a pyschotic outburst -- to have him admitted into the hospital. Also, my Mom has had negative reactions to Morphine. She had her knee replaced and was given morphine for the pain. The first few days in the hospital she was hallucenating, thinking she was places other that the hospital. The nurses didn't believe me, when I told them she was loopy from the medictaion. Then, they tried help her move from sitting in a chair, back to her bed, and she became highly agitated (yelling and hitting). Then they realized she was having negative side effects from the morphine. Once she came off it, within a day, she was back to self. My suggestions --- --- Try going higher up the ladder in Hospice (regional headquarters) -- there may be more resources to tap --- but don't just take what they tell you at face value. Tell them you need help now! --- You may need to have your Dad admitted into the hospital, to get his medications regulated better. (This may require signing him out of Hospice.) --- If you can afford it --- try in home care. Work through an agency --- we found two ladies who worked well with my brother ( a strong 47-year old 220lb. guy) and with my parents and I. (By going through an agency -- if one caretaker doesn't work out, you can reguest a change.) I know this is very expensive -- but it will help provide you and your husband some time to rest and regroup, knowing your Dad is being cared for. This aging and illness stuff isn't for sissies --- it can get very intense and wear down even the strongest person! You can't help your Dad if you get sick from worry and exhaustion. Remember to take care of yourself too! My prayers and thoughts are with you and your family.
http://www.hospicepatients.org/terminal-agitation.html I wish I knew better how to help you, Eizabeth, but I did a little on-line research and found this quote on the site above: "Knowledgeable palliative care professionals will be most effective in managing crisis situations such as terminal agitation. If crisis symptoms are not being well handled by staff at the bedside, it is paramount that the physician be consulted about the best course of action to comfort the patient and relieve his or her distress. Terminal agitation is a hospice crisis and meets the criteria for starting the continuous nursing care level of care. (See Continuous Nursing Care in Hospice)." I have seen two cases of such agitation, but not as bad as you describe. The situation was bad enough, however, that after two nights on our own, my sister and I begged for overnight help at home. Hospice sent a very experienced nurse who did her shift and agreed out of her heart's kindness to stay the rest of the night. Eventually she got our loved one quiet and into bed -- before that he was too distressed and agitated to rest. At 7:45 that morning, he died peacefully, I hate to say, much to our relief. The entire situation was so distressing and, from our point of view, terrifying, and his suffering had been so horrifying that his passing was a blessing. My advice is to call the doctor, call hospice, call the VNA or a private agency -- get a friend or relative to help you with the calls -- call and call again until they send you trained assistance. My prayers are with you and Lee and your Dad. May you all receive the help you need.
Elizabeth, I'm a newby at this so I have no experience to offer you but I have thought about you often since I read your blog last week. I just wish I could be there (wherever there is) to lend you a hand. You and Lee are carrying such a heavy load! Your journey with your father's Alzheimer's has been incredible. Since reading your blogs, I find myself wandering all the time what the future will hold for my Dad. My mom is like yours (very difficult at best) and I'm very close to my Dad so if he lives long enough (he's 81), I may find myself in your shoes. I've learned so much from your blogs and from people's comments on your blogs. I know there are many people, myself included sending good thoughts and prayers your way! I think you are right though...it's time to force your hospice provider's hand. You and Lee need help now! Hopefully by the time you read these comments you will have already been provided some help.
How about hiring a in-home "sitter/caregiver" who is not a nurse? I am not a fan of Hosptice because my experience (as a nurse) with them is that they present themselves as a in-home caregiving solution that they seldom are & once you've signed their "contract" you can'e easily back-out & get help anywhere else. I would love to hear from people out there on this issue & how they have managed w/them--especially anyone from hospice.
We have experienced such anxiety from our dad when he was in rehab. Those drugs you mentioned? All those increased our dad's agitation. rehab used to call us in the night asking us to come. We experienced the same sleepless nights as you as we sat next to him trying to calm him, and the same frustrattions. It was much less of a struggle for him when they stopped giving those medications but it was fight for us to have that happen.