Hi, I found this forum whilst browsing the net last night. Hello to you all! My Dad has had vascular dementia since 2002; the result of complications during a heart valve replacement op which starved his brain of blood and oxygen during a lengthy surgery. He was in a coma for days, and we were warned that there had been damage to the brain. The dementia became apparent gradually; at first we wanted to believe that any signs were simply the after-effects of too much anaesthetic, but over the years the symptoms became worse. When you watch an articulate, intelligent, talented and loving man change into someone who becomes unrecognisable in so many ways it is like watching a car crash in slow motion. You know what will happen, you can't do a thing to change it, and it is utterly painful to see.
My Mum cared for my Dad at home for 7 years, but the strain was beginning to take its toll on her own health. We managed to get my Dad into a Day Care Centre a couple of years ago, 3 days a week, but we had to tell him he was a volunteer there. Every time we took him, he said he had no idea where he was going, and he wasn't happy about being there. Eventually he became difficult for the staff to cope with, as he began saying inappropriate things - totally out of character; yet another symptom of his dementia.
His delusions of Grandeur began about 3 years ago, and as a result he became quite difficult, perceiving himself as better than other people. Last summer we managed to persuade my Mum to put Dad into respite for a week, which was very hard to do. Although Mum found looking after him incredibly stressful, she and Dad had been married since 1954, and she found it hard to be without him. The respite week wasn't a great success. Dad insisted on phoning us every day, several times a day. He had no idea where he was, he was confused, angry and upset.
For some time Dad had suffered from occasional incontinence, he would forget to wash, so Mum had to prompt him to shower and shave every morning, and would set out his clean clothes, otherwise he would put dirty ones back on. He would hide soiled clothes in the wardrobe or in drawers, so Mum had to keep checking these places. Dad lost his sense of smell not long after the op - we were told this can be another sign of dementia, especially when a particular area of the brain has been starved of oxygen. So when he was putting soiled clothes away, he couldn't appreciate that they were not fresh. He forgot how to help around the house, and began emptying the dishwasher and putting the dishes away when they were still dirty, altering clocks and calendars to the wrong date and time, and generally doing things the wrong way which meant that Mum had to go around after him putting them right again.
He became angry a lot, and would shout at us, and threaten to kill himself. Then the next minute he would tell Mum how much he loved her, and how wonderful she was. He would tell her these things over and over again, and the next minute he would be calling her terrible things and yelling at us both.
Mum was an angel, but everyone could see that she was becoming ill as a result of coping with Dad. My husband and I were spending more and more time every single day, just trying to help her to keep it together. She was really struggling to cope.
Then one afternoon last summer, after Dad came back from the Day Care, he was very angry because staff there had not let him "take over", and he actually became physically aggressive towards me, literally throwing me out of their house, telling me he hated me and never wanted to see me again. This was my lovely father, whom I had always adored, and I had always been his "little treasure". I didn't know what to do, and ran to the neighbours, who fetched Mum whilst we left Dad in the house. The doctor came, and Dad was sent to a locked mental health ward in hospital, where he remained for 5 weeks, having a continual assessment. It was decided after this time that he could not return home, and he has been in a care home since July.
At first we told him it was for convalescence, which he accepted, but then the psychiatrist said he was to be told the truth - that he wasn't going home. Of course, his memory is so poor that he would forget things as soon as anyone told him anyway, but what is real for him is the moment he is living in, and all those moments were torture for him. He knew he wasn't at home, he wanted Mum, his delusions of grandeur became even worse, and he became verbally and physically aggressive towards staff.
Now he wants to go back to England, where he was born. He is convinced his family have been writing and phoning to ask him to "come home" - even though all his family there have been dead for years. He seems to have distanced himself emotionally from what has been the purpose of his entire existence for 56 years - his wife, his 2 daughters, and 5 grandsons. He can hardly remember his grandsons now. I'm sure it's only a matter of time until he forgets us too.
If he was contented, I could accept this more easily, but he is is a constant and unchanging state of torment every single moment of the day and night. He writes copious notes about how he is feeling, and the notes repeatedly prove that he is in terrible anguish and torment. It is heartbreaking.
We have requested a family meeting with the psychatrist, whom we have only met once, at our own request, shortly after Dad moved into the care home last summer. Staff have told us that Dad presents himself well when he does see the psychiatrist - of course he does! He thinks is he says he is fine, he will be discharged and sent home!
We want to ask the psychiatrist to reconsider giving Dad some form of medication to help to lessen his anxiety - at the moment, he is on no meds for his dementia, and he refuses to take his usual meds (BP, blood-thinning tablets etc) unless my Mum gives them to him. As we were instructed by the psychiatrist to restrict the amount of times we visited Dad (apparently we were visiting him too often) we now only see him once a week, so Dad has hardly had any of his meds for weeks.
I cannot bear to see this happening, and my Mum and I feel as if we are in a continually changing state of anticipatory grief. I feel desperately sorry for my Dad. He was such a wonderful man - so kind, loving and generous, and he doesn't deserve this. It is so sad.
(P.S. I accidentally previously posted this in the wrong thread - being a newbie, I still have to find my way around the forum! But sincere thanks to CaringSister54 and Debs for your messages - I have replied to you both on the same thread as you found me on last night! Bless you both.)
I hope you talk to his doctors soon and get them to try drugs to relieve his agony. WHen my step dad was still alive and caring for my mom he did nothng to asure she would be given the right drugs for the stage she was in. If she went off the deep end but had no scheduled appointment with her neurologist for months she was just out of luck. Not us, now that she is in our care...moving to an assisted living facility from her independent one..we call the doctor at the drop of a hat.
And as for his doctor telling him the truth..what the .... ??????
We tell mom only what she needs to know and most of the time that is nothing. We tell her where her teeth are....not why she is in an assisted living facility. We don't scare her needlessly with frightful facts.
We are all here living the same thing you are...dealing with this same horrid disease. So we understand. Stick with us.
Sorry, so sorry for you and anyone in this same boat. I too watched my wnderful mother deteriorate. She passed away in2007 ..a blessing for herself and the family.
Yes, the others are right - there are drugs to cover every strange symptom he has ----except healing his dementia. He can be calmed down, his hallucinations can be kept under control, etc. I hope you find a good neurologist, preferably a specialist in elderly patients. Good luck. You have found a place where people understand what you are going through!
Thank you Martha, I so appreciate the support, advice and encouragement of yourself and others on this forum. I am trying to keep positive about the situation, and this week we are awaiting the outcome of the psychiatrist's visit to Dad, so I will post the update as soon as I have the results. Take care, Wursty X
Thank you Emily, it is so good to have the support of others who understand what it is like to go through this. No, we can't change our psychiatrist, unfortunately. There are two geriatric psychiatrists in charge of this area, they both work together, and Dad has been seen by them both. Apparently the laws in Scotland are very strict regarding which types of medications can be administered, and there are plans to make it unlawful for any type of sedative to be prescribed to patients with dementia. I have spoken to the mental health nurse in charge of Dad's care home, and the psychiatrist is due to visit Dad either today or Thursday, after which he will call me and update me on whether or not he has reconsidered prescribing meds. The nurse thinks it is perhaps time, as Dad is angry nearly all of the time. He no longer asks about his family, his delusions have taken over. He thinks he is a member of parliament, and a member of the royal family - this has been going on for about 3 years, but it seems to have become much worse over the last few weeks. Our GP is lovely, but he can only help Dad with physical illnesses, and is powerless to change anything regarding Dad's mental health. All roads lead back to the psychiatrists in charge, and the road stops there. I'm keeping my fingers crossed that Dad will be prescribed something to make him more comfortable, but I have been told that they are worried about the potential side-effects (eg stroke) so they may not consider it worth the risk. I'll keep you posted, but I realise that I put my first message on the wrong thread, and so I started another one called 'Newbie to this forum'. I'll copy and paste this reply on that page also so that I will hopefully be able to keep my messages together. Thank you for taking the time to respond - I wish you all the best too, take care.
Meg - thank you for your reply - it sounds like you had an awful time when your stepdad was looking after your mom; you must have felt powerless to help. I am so glad that eventually you managed to take over this role, and that your mom began to get the care she deserved. You are obviously a devoted daughter too! Thank you for your concern and your support. It means so much. I will post an update on this thread once the psychiatrist has visited Dad this week. I have a long list of questions at the ready! Wursty X
Hi Meg, I thought I had posted a reply to you, but now it seems to have disappeared, so I don't know what mistake I have made, but I didn't want you to think that I hadn't responded to your kind message. I am so glad you were eventually able to take over the care of your mom - you are obviously a devoted daughter! I am so grateful for the concern and support which I am already receiving after such a short space of time on this forum. You have no idea how much it helps. I will update you on the situation once the psychiatrist has been in to visit my Dad this week. Take care, love Wursty X
Governments make laws that they THINK are beneficial but so many of the laws are not a one size fit all solution. That looks like the situation you are in Wursty. It appears on the surface that medicating dementia patients for psychiatric problems is unfair to the patient... especially when these drugs are over used. But in reality it puts people like us in a horrible situation when we are trying to use these available drugs responsibly and are hampered by legislation that is put in place because of a few abusers. I have always said that you can't legislate common sense.... but you can take away the potential of using common sense with legislation. Especially when you take the final decisions out of the hands of the people involved in the patient's care (family and doctors).
And I will venture to say that this very situation is what scares me about the new legislation on Heath Care here in the US. There is way too much potential for knee jerk reactions to a specific situation that will lead to legislation that will be detrimental to the general population.
Wursty, I do hope you get some relief for you father and yourself. Continue to advocate for your Father! And if necessary make noises publicly to change whatever law it is that with holds these medications from the ones that could benefit from them. Yes, our loved ones deserve relief... even if they do have dementia!
hi wursty, my mom had vascular dementia. my dad tried taking care of her, but when she became worse we had no choice but to put her in a nursing home. they kept changing meds for my mom without even telling us. you have to be on top of this situation. my mom passed this last june. these boards are wonderful. i never have found more support from these people about this horrible disease.
Wursty, maybe your Dad needs to be in a care home. That would be easier on you, and he would have round the clock care. Then THEY would be responsible for his medications. It might be surprising that they may start him on anti anxiety and anti psychotic medicines when he starts disrupting THEIR routines.
Meanwhile, have you thought of trying over the counter drugs (non prescription?) There are things to enhance sleep, to calm nerves, etc. Some are herbal medicines. I use St John's Wort for my own Winter Depression from November to March.
I also use melatonin as a sleep aid. A doctor doesn't have to prescribe these things.
Wursty, you're really stuck between a rock and a hard place! Maybe you can start documenting, even videotaping, some of the things he does that would indicate that some of these medications would benefit him. I hate to say, but too often, the doctors don't take all the symptoms seriously because they don't have to live with it themselves. It's easier to not prescribe and thus not have to take the responsibility and just let the family or caregivers deal with the problem.
Don't give up. Your dad needs you more now than ever! Keep being his advocate and pushing for what he needs!
Hi Debbie and Martha,
Thank you so much for your messages, it is so comforting to know there are others who truly understand.
My Dad is in a care home at the moment - he went into full time care in July, after a 5 week assessment in a mental hospital. He was taken into the hospital as an emergency one evening in June when he was very angry about one of his delusional beliefs, and he became violent and aggressive towards me. The doctor admitted him that evening, and he has never been home since. I have had so many feelings of guilt because of this, but I know it was actually a Blessing in disguise, because my Mum would never have allowed him to go into a care home if it had been her choice. This way, the decision was taken out of her hands, but now we feel powerless to help Dad. At first we used to visit him every day. The care home is nearby, so Mum used to walk along and take him out for a coffee, or lunch, and sometimes she would go back an sit with him watching TV in his room. She missed him, and this way she could still keep seeing him without the 24 hour care which was taking so much out of her. We didn't want Dad to know that he was there forever, and so we asked that he be told he was only there for convalescence; however, the staff were finding him challenging to say the least, and so we were asked to restrict our visits, and staff were instructed by the psychiatrist to tell Dad the truth about being there for good. We used to leave notes for Dad to remind him that we were still alive (he worried that we had all died, because his memory was so poor that he forgot we had visited even before we had left the building) and that we were fine. We would write notes to say that we loved him, and we would be in again to see him the next day, and he would write copious letters and notes to us whilst we were away, asking over and over again what was happening, why he wasn't at home and what he had done wrong to be 'locked up' in this way. The psychiatrist said we were to stop leaving him any notes whatsoever, that we had to 'let him go', and that it would be easier all round if he forgot all about us. As you can imagine, this has been so hard for us as a family, and it is heartbreaking for us, especially for my Mum and for me. My sister lives some distance away, and although she is a great support to us, and comes up as often as she can, she admits that it is slightly different for her because she is not living with it every day.
So you can understand why we are frustrated and upset that Dad is still in 24 hour a day torment, every living day he exists, and yet despite being in 'care', he is still not receiving any medication. The psychiatrist is adamant that the risk of a stroke is too great, and when we ask, he turns the guilt back on to us, saying things like "if you think he is unhappy now,would you feel better if he had a major stroke and was like a vegetable? Would that improve his life? Would you like to see him sedated so that he couldn't communicate with you at all, and would you like to see him shake with the tremors which these medications can cause? Is that really what you want?" We have restricted our visits to once a week, when we take him out for a run in the car to familiar places, and have lunch, before taking him back to the care home. Recently, he has become more fixated with his delusions. He thinks he is a Lord, and a member of the royal family, and he is angry all the time. The staff cannot keep him clean and well presented, they say, because he is challenging, and won't let them help him. He forgets that he has not washed, sometimes he sleeps on top of the bed in his clothes, he won't let anyone apart from my Mum help him to shave, and he won't change his clothes every day. This fact alone suggests that the staff cannot cope with him, and that he needs some kind of medication to make him less challenging. The trouble is, when he was discharged from the mental hospital ward to be put into care, they recommended that he be placed in a 'EMI' ward (Elderly Mentally Infirm) - basically a locked unit. We viewed the only available ones in this area, and we hated them. They were horrible, and Dad would have been even more unhappy in that environment. The care home facility he is in at the moment is a very comfortable place, and they do try to make it as homely as possible, whereas the EMI units were reminiscent of a lunatic asylum. However, the staff there are used to challenging behaviour, and and seem to be able to cope, whereas the staff at the care home, although they do cope, they don't seem to know how to handle him when he is aggressive, and he has actually hit them in frustration. We are afraid that if we push too hard, the psychiatrist may insist that Dad goes into an EMI. We only managed to avoid that in the first instance after persuading the psychiatrist that Dad would be better in an ordinary care home facility. Whatever we do, Dad is only going to get worse. We know this. He has already begun to distance himself from us emotionally, and although he knows who we are, he is starting to forget his life with us, so we are aware that we are on a downwards spiral. It is like embarking on a journey over rough seas, knowing that storms lie ahead, and all we can do is hold on as tightly as we can, and not let go. Even though we cannot help Dad through his emotional tempest, we will be there by his side until he reaches his final destination, even though he won't realise we are there. Throughout this journey, I will keep a steadier hold with the help of wonderful people like you on this forum who provide so much support to others in similar situations. Love Wursty X
Thanks, Wursty, for making it all clear. I am so sorry. I disagree with that psychiatrist. In fact I disagree so much that I would answer him, "being in a vegetative state is better than being angry, upset, wondering why he is 'locked up', being dirty and unshaven, and being unhappy all the time." But we don't have the power to contradict whose in authority.
I do understand that it might really be better for him if you went less often, which you are now doing. Sad as it seems, as long as he hates being there and wants to go home, his adjustment is harder.
As for keeping him clean, that is a basic need; if they cannot do it they are not doing their job. Is there a governing body (oversight Board?) to whom you could send in a complaint?
My son in law worked at a psychiatric hospital during the time he was studying to become an RN. Because he was a man and bigger and stronger than most of the female aides, he was the one who got the big strong stubborn patients ..and yet, he did manage to get them clean, shaved, dressed properly. That institution may need to hire more help, especially men.
I am sorry to be so critical, but all of you are suffering because of the poor care he is getting, and it so painful to hear, especially in the light of my experience with my Mom. She was cared for in such a loving environment, that 2 years after her death I still thank God every day for that wonderful Nursing Home.
Thank you Emily and Martha,
I won't give up on my Dad, I agree that he needs us now more than ever. Thank you both for being so supportive. I will bear all the advice in mind, and wait to see what happens with the psychiatrist's visit which we were promised today, at the latest. We did request a family meeting, (without Dad there, of course) but I received a call from the care home on Monday evening to say that the psychiatrist's secretary had been on the phone. Apparently, as he has just come back from annual leave and is exceptionally busy, a meeting may not be possible. If this is the case, I have been promised a phone call instead. I will keep you posted! Love Wursty X
Wursty... hugs to you for your persistence and advocacy for your father! You have absolutely no reason for guilt because you are doing all that you possibly can in an impossible situation!!
As for the psychiatrist.... I would like to strangle him for you and for your father!! I disagree with so much that he says. You don't just leave a dementia patient in their angst and frustration. Their minds can not assess what is going on around them so you create a situation either physical or chemically that they can live in peace and harmony. Yes, both my Mom and Dad are on medications that MIGHT create unwanted side effect... but they are as happy as they can be in the moment. If Mom has a stoke from the Geodon, so be it.. the fact that she can live until now and then happy is what is important. I will take what comes when it comes. I am dealing with Dad's tremors now, which may or may not be caused by his medication, but at least he is calm and happy even if you do have to help him get his fork to his mouth. Yes, there are side effect but I truly believe that peace of mind is worth the risk. So the next time the psychiatrist throws that guilt trip at you ask him if he would rather rage for the rest of his life or have a slightly shorter life that is happy. What good is quantity of life when there is no quality of life????
As for the psychiatrist being unavailable because he is busy. Don't give up trying. Be the squeaky wheel that eventually gets the attention.
As for your Dad's caregivers, I am sure they are doing what they can. My Dad can also be very uncooperative to the point of combative. His caregivers do an amazing job working around his resistance. Is he shaved every day? NO! Does he get a shower every time he is supposed to? NO! Does he always have on clean clothes every day? NO! But he is clean enough, and changed enough, and shaved enough. At this point I truly believe his peace of mind is more important than having him squeaky clean and presentable to the public. They make sure that his bottom is cared for immediately when needed and he is clean enough not to have skin issues. That is truly what counts. When they get in a situation that this is not possible then they do call me to come and help them which I do. I can usually talk him into what he doesn't want to do but sometimes even I am unsuccessful. It's not that the caregivers don't know how to do it... sometimes the stubbornness in Dad won't let them do it. At those time you do the minimal care that will get you by and let Dad be happy in his wrinkled shirt
As for it being better that Dad forget you. Again I want to strangle that Psychiatrist for you!! How dare he say that to you. Yep, I am pretty irate at that man. There is no kindness in a man that would say that to you. It will happen soon enough without him smacking you with it.
You are doing everything right in a bad situation. You need to know that. Keep advocating for your Dad as you are. At some point I do hope that you are heard and something is done to relieve your Dad's angst. I will keep you and your dad and the rest of your family in my thoughts and prayers. I pray that at some point your Psychiatrist will look beyond his current focus and take the well being of the family into consideration as well as the well being of your Dad.