Hi,
I am discussing this with family, but I would really value your impartial opinions. I know some of you have/are dealing with dementia either among your selves or with loved ones.
My father is in his mid-80s. He has had a couple of heart attacks, a stroke (he recovered well), but also a lot of TIAs over a number of years. He has medication to control all this. What has changed is that he is regressing into his childhood, struggling to form new memories, and where he makes a mistake he won't simply reverse, but will confabulate some elaborate justification why why his was right. He has become very stubborn and not open to anything new (places, people, things, food). He doesn't really follow conversation any more. He observes rather than joining in (not a problem in itself, but part of the picture). He is forgetting who people are, struggling to find words etc.
In company he can put on a good show for about 60-90 mins, but that's his limit. Unfortunately his slips are becoming more and more depressing. He suddenly become rampantly anti-Jewish (which is awkward given some of our family are Jewish). We rarely go out for meals because he can be so aggressive with staff and ruin a night out. I have had to rescue him from situations where he squared up to people like he was going to hit them. So there is a real change in personality.
I am pretty sure it is dementia. While I have a PhD in psychology, this is absolutely not my field of expertise and I do not work in heath care. I don't hold any magic keys here.
Dad is in total denial about getting old. In shops he has a standard joke where he will say "good thing I'm not buying alcohol, or you'd need to see my ID". (That's very out of place in the UK, it isn't like parts of the USA where you routinely need it.) The joke is heartbreaking. There is no knowing irony there. I can feel the desperation to still be young.
Dilemma:
Option 1) Sit him down and tell him his behaviour is really worrying us and we want him to see a doctor. Problem: He will be VERY upset. If there were a cure then maybe that would be worth it, but I fear undermining his self esteem for what remains of his life. I suspect he will refuse to see a doctor about this. He could have another stroke or heart attack any day. Every time I speak to him I make sure to end by saying "I love you," so that when one day it is the last time I'll have the slim comfort of knowing my last words to him were good. It sounds so selfish, but I don't want us to fall out for a whole in case he dies in that time. Problem 2: If he does believe us, he will be crushed. He still has a few interests and I don't want him to revert to just sitting in front of the TV. His life is getting very narrow anyway. I'm fairly sure he is depressed (and realise this is often confused with early dementia symptoms) and I think this could make him a lot worse.
Option 2) Accept that this is going to get worse, but not force the medical route upon him. We give him the best diet, suppliments and care we can. We stimulate him by letting him talk about the past. We don't make him do too much (whilst not babying him). He might not live so long. Maybe he will miss out on drugs that might have delayed the onset.
All I have done so far is convinced my mother who lives with him that they must get help as soon as he has a TIA - not wait until tomorrow to see if it gets better. I have also given them a packet of aspirin so he can be given one immediately. We also have power of attorney in place, although it is actually to my sibling who loves furtherest away and knows least about this - but it is there.
Personally... it is so hard. I'm a lot younger than you might suppose for someone with a 85 year old father. I'm not ready for him to be this old. I'm not ready to deal with dementia and lose my dad. It sounds so selfish, and I'm not suggesting that if I were twenty years older it would all be fine. But this is clouding my judgement.
There are many wise, intelligent and kind people here. I hope you don't mind me leaning on you for advice. Thank you for reading this far. It is a bit of a ramble because it is complicated and very emotional for me.
Hi barq-
So very sorry to hear about you and your family's troubles. Has your dad seen a neurolgist? My mother passed at the age of 85 from a combination of diabetes and alzheimers. It is a horrible thing to watch. The current medications can slow down the progression, but as you said, no cure.
I believe that people know when they are declining, in their own way. There came a time when my mother would get very nasty to her aide. The wonderful doctor gave her xanax, as needed. That is only a good plan if you want the person to be sedated all day. I had him prescribe 2mg. Haldol daily and the nastiness went away and she wasn't as unpleasant to be around. But by that point, I doubt that she knew what she was taking, as her capacities were so diminished. She did not have strokes or a heart attack. I truly believe that the diabetes accelerated the alzheimers.
I think that you have to take care of yourself and prepare for the worse and hope for the best. Only then can you help your parents. Some folks enjoy the stimulation of adult day care, being around others, doing activities and most people won't remember the story your dad told the day before. Other folks prefer to isolate and give up on life. But either way, all the symptoms you describe, add up to dementia. Figure out how to take care of yourself. Is there anything else you want to do or discuss with your dad, as now would be the time.
I am so very sorry, barq-I hope you guys have more good days than bad. Best always, Rumor
(06-06-2016, 09:37 PM)Rumor Wrote: [ -> ]I believe that people know when they are declining, in their own way. There came a time when my mother would get very nasty to her aide. The wonderful doctor gave her xanax, as needed. That is only a good plan if you want the person to be sedated all day. I had him prescribe 2mg. Haldol daily and the nastiness went away and she wasn't as unpleasant to be around. But by that point, I doubt that she knew what she was taking, as her capacities were so diminished. She did not have strokes or a heart attack. I truly believe that the diabetes accelerated the alzheimers.
I think that you have to take care of yourself and prepare for the worse and hope for the best. Only then can you help your parents. Some folks enjoy the stimulation of adult day care, being around others, doing activities and most people won't remember the story your dad told the day before. Other folks prefer to isolate and give up on life. But either way, all the symptoms you describe, add up to dementia. Figure out how to take care of yourself. Is there anything else you want to do or discuss with your dad, as now would be the time.
Hey, thanks for your lovely reply.
I know two people who went VERY nasty during their dementia. Their ability to remember the one thing in the world that would be most hurtful to someone, whilst apparently forgetting virtually everything else was very hard to deal with.
We aren't at the haldol point with my father. This is me planning ahead. He is pulling away from us, but still there. As you say a good time to think whether there is anything I really need to say/ask.
The biggest challenge is getting my family to agree a response. I see him far more than my sibblings, so I see more. He can put on a good show for one of their brief visits. So when I say, "You know, he's not as good as he seems," it gets regarded as paranoia. I get the reason why... so much nicer to believe I'm just a bit over protective and he'll be fine really. But I need them to confront it and need him to confront it. he has his own reasons for being in denial. He is also a generation would find the idea of taking anything for his mental state a sign of weakness. I have a lot of people to convince in this one.
Well there is a five day family holiday coming up later this year. He won't be able to keep it hidden for that long. But I suspect some of them will find a new set of excuses to rationalise it away. I wish we were all on the same page so we could support each other. I would be even happier to be show to be overly paranoid and things not as bad as they seem. Never had a problem with admitting when I am wrong - especially in this case!
Anyway, thanks for your reply. It helps so much to know someone else knows what I mean and for your kind words.
barq
(06-08-2016, 05:01 PM)barq- Wrote: [ -> ] (06-06-2016, 09:37 PM)Rumor Wrote: [ -> ]I believe that people know when they are declining, in their own way. There came a time when my mother would get very nasty to her aide. The wonderful doctor gave her xanax, as needed. That is only a good plan if you want the person to be sedated all day. I had him prescribe 2mg. Haldol daily and the nastiness went away and she wasn't as unpleasant to be around. But by that point, I doubt that she knew what she was taking, as her capacities were so diminished. She did not have strokes or a heart attack. I truly believe that the diabetes accelerated the alzheimers.
I think that you have to take care of yourself and prepare for the worse and hope for the best. Only then can you help your parents. Some folks enjoy the stimulation of adult day care, being around others, doing activities and most people won't remember the story your dad told the day before. Other folks prefer to isolate and give up on life. But either way, all the symptoms you describe, add up to dementia. Figure out how to take care of yourself. Is there anything else you want to do or discuss with your dad, as now would be the time.
Hey, thanks for your lovely reply.
I know two people who went VERY nasty during their dementia. Their ability to remember the one thing in the world that would be most hurtful to someone, whilst apparently forgetting virtually everything else was very hard to deal with.
We aren't at the haldol point with my father. This is me planning ahead. He is pulling away from us, but still there. As you say a good time to think whether there is anything I really need to say/ask.
The biggest challenge is getting my family to agree a response. I see him far more than my sibblings, so I see more. He can put on a good show for one of their brief visits. So when I say, "You know, he's not as good as he seems," it gets regarded as paranoia. I get the reason why... so much nicer to believe I'm just a bit over protective and he'll be fine really. But I need them to confront it and need him to confront it. he has his own reasons for being in denial. He is also a generation would find the idea of taking anything for his mental state a sign of weakness. I have a lot of people to convince in this one.
Well there is a five day family holiday coming up later this year. He won't be able to keep it hidden for that long. But I suspect some of them will find a new set of excuses to rationalise it away. I wish we were all on the same page so we could support each other. I would be even happier to be show to be overly paranoid and things not as bad as they seem. Never had a problem with admitting when I am wrong - especially in this case!
Anyway, thanks for your reply. It helps so much to know someone else knows what I mean and for your kind words.
barq
Hi Barq,
Please don't take this wrong, it all sounds, given the situation, about normal. My dad was diagnosed paranoid schizophrenic, so there was not much talking to him, before he took his life. The family's reticence, your own understanding from closer contact. People declining with dementia are not being nasty, just demented.
Say, as you have already realized, what you can to your father now. He may not remember it tomorrow, but if he can still hear you, then now is the time. Your assumptions about your greater family's response is also normal. You are lucky to be the one who realizes the situation, as confusing and painful as it is.
There is only what you can do and manage day to day, with dad, and with family. You sound like a good person. I would only suggest minimizing the sensory input for your dad. A "gathering" could quickly turn into undue hurt to your father. It's up to your family to accept, not your job. Try not to feel you need to take it all on you, because that is not the reality.
Peace to you, your father, and your family.
Spanky
(06-09-2016, 12:56 PM)FirePlaces Wrote: [ -> ]Hi barq.
I have some experience with this issue as well. For me, it was my mother who lost her mobility and her mind over a long painful 7 year period until she died at the age of 77.
I am sorry that your siblings are not accepting of the reality of your father's decline. Support in this type of situation would really help.
My two cents. I would talk to your Dad about how you believe it is worth it for him to see a neurologist. Perhaps there is some solution to the physical and mental changes from which he is suffering. Cite maybe 3 specifics which are not too insulting to him as examples. Explain that you want him to have the best quality of life going forward. Offer to take him to the doctors and keep it all on the down low if that makes him more comfortable.
I don't think you should (or would) force any medical care on him but IMO you need to make the suggestion as honestly and forcefully as you feel appropriate, even at the risk of upsetting or alienating him.
Maybe you could shoot out a group email to your siblings summarizing how your chat woth your Dad went, why you had it (know your words here could get back to him), amd how you would really appreciate their support in his just going to chat with a doctor to see what is available that might help improve his quality of life.
So many words I know. Just important to choose our SO words carefully when discussing these issues with our parents.
I need to reread your post again to see where your Mother falls in all this.
I believe that we must be willing to have those tough conversations with those we love. Putting one's relationship on the line in order to help one we love, well to me, that is true love.
It's as if the effort is almost as important as the result. Even if your father chooses not to go to the doctor, well at least you know that you tried.
Great suggestions Fire, I'm sure Barq very much appreciates real ideas he can use to help. The group email to family is an excellent idea, as were all. Glad you are here, and willing to offer your experience.
Spank
Barq:
My Father died of complications due to dementia a month ago at the age of 95. He was a wonderful, hardworking Father who was totally devoted and loving to his family. It always amazed me that he and I shared all the same interests... steam locomotives & railroads, everything geology, collecting gold bullion coins, big sailing ships, the weather, hockey, and watching both the Tour d' France bike race and the Indy 500 with me on TV... and on, and on. We were close, but unfortunately I can't say "always until the end".
Something happened to my Father about the time he turned 70. Most of the time he was just the same Dad, but he developed a devious side. I'm not going into a lot of details here, but unfortunately most of his under-handed actions were directed towards my Mother. None of us understood what was happening to my Father. I began to hate him and wish him dead, not understanding that it was a disease that was affecting his behavior.
It took a few incidents of him getting lost while driving before he started receiving medical evaluation and treatment. Initially, he was diagnosed and given medications for Alzheimer's disease. He remained at home, but his cognitive ability and motor skills continued to slowly decline. Finally, it reached the point where he was having a hard time getting out of bed and it was just getting too hard on my Mother, even with the help of me, my Sister, and Brother. We were left with no choice but to admit Dad to a nursing home in 2009 at the age of 87. We all felt that we had failed him and our Mother, and that was really hard. The pain of this life changing event was made worse by the fact that, from the day we admitted my Father to the home, he never walked again, he never spoke more than 3-5 words at a time, and true conversation with him ended forever. A good visit with Dad diminished to a brief smile after a one-way conversation, or just sitting in silence outside together on a beautiful sunny Sunday afternoon. Eventually we lost that too.
Around Thanksgiving in 2016 Dad stopped eating most of his meals. By Christmas his weight was way down and he still refused most meals. He started to waste away to the point that his Doctor did not think even a feeding tube would save him. I began to dread my visits to the nursing home during the winter months of 2017 knowing that my Father was dying. I'd known he was dying for the last eight years, but I was starting to crack now as well. I could no longer find a strong voice to speak in one-way conversation to my Father and we just sat in silence during our visits, his hand in mine.
My Father died on March 26, 2017. After his initial diagnosis of Alzheimer's disease he was later diagnosed with Lewy Body Dementia by a very competent VA Physician. As far as I'm concerned, my Father's cause of death was starvation. His death certificate stated complications and various imbalances due to advanced Parkinson’s disease. I learned that dying of starvation is not just a feeling of weakness and hunger. I learned that death due to starvation is very painful as internal organs shut down and the end approaches. My Father required the max. allowable dose of Morphine to stem his pain in the end. It was a horrible thing to see, even for a man of his age. He was silent through it all and I think that was his last conscious effort to show strength for his family.
I Love You Dad.
Barq:
I would be very interested to know how your situation has evolved over the past year with your Father. This thread is a bit dated but the dilemma still exists.
Black Bird
Hi Raven,
Sorry to hear about your father. Although an impressive age, you've all clearly had a very difficult time since 2009 (well, presumably before as well). That sounds incredibly hard, so you have nothing but my best thoughts. I've posted more detail below, but your description of losing your father in a very drawn out way resonates. I don't think mine are about to die quite yet, but some of the things you have gone through are coming my way eventually.
Anyway, you asked what happened... It got overtaken by events. Firstly I suffered a life changing injury. Then my mother was ill for a month, so I had postpone my operation to look after her (it was fine, but could have gone the other way). We had a couple of months getting back to normal, which for me meant working 7 days a week to catch up. Then she broke her neck and had a stroke. So all the attention has gone to her for obvious reasons. I have discovered that if my father were "officially" labelled with dementia, then there are serious implications for how/when the hospital would release my mom. As a family we are providing 24/7 care for him during the two months while she has been in hospital. (Juggling that with a full time job is exhausting in ways I never imagined.)
Whilst it is very stressful for him, and they've never been apart for more than a few days before, it has revealed the extent to which she has been compensating for years. So now I have absolutely no doubt. However, I think it has to wait until she is a bit more recovered. He has a degree of recognition that he hasn't coped that may provide a way to start that conversation. Before my siblings were an obstacle because they preferred to believe I was being over anxious, rather than he really was declining. Well, they've all seen his complete failure to cope so there's simply no denying it.
Sometimes in a family crisis everyone pulls together and becomes closer. I'm sad to say that the level of passive-aggressive behaviour among siblings has been really shocking and at times I have been drawn into it (which makes me rather ashamed). However, it is an obstacle in terms of any agreed action for my dad. It is possible that once things calm down people might put their egos aside. I hate this because it is so petty and I think we will look back with deep regret. But I haven't found a way to shake us out of it.
Raven, I found your post very touching. I'm so sorry for what you've been through. It is also a future I see coming for me and my family, so there is comfort in knowing I'm not alone. It was very kind of you to share your experience and you've given me some real insight into my own situation.
Best wishes, barq
Barq:
- Don't let your Father's affliction shorten your Mother's life! She has some serious health issues that require equal attention.
- Take care of yourself! If you are making yourself sick trying to help, can you, in fact, really help?
- Choose your strongest ally (hopefully allies) amongst your siblings and work with them. Don't try to sort out everything yourself.
- When the time comes, if a decision must be made to place your Father in a Nursing Home, then don't beat yourself up about "putting Dad away". That emotion is misguided.
Alzheimer's - Dementia - Parkinson's I know now that there is a fine line between these conditions as I stated in my original post. Initial diagnosis for my Dad (Alzheimer's) - Most Likely Condition (Lewy Body Dementia) - Cause of death stated on his death certificate; "complications due to advanced Parkinson's disease."
We were fortunate to have access to a facility with an absolutely fantastic staff available for my Dad. He spent eight years there! The weekly one on one visits that I had with my Father during this period were truly quality time and I am very, very thankful that, even though the conversation was always one-sided, we had this time together. We grew closer to each other during this quiet time. It was never spoken, but I know it to be true.
None of this is easy - but you should never give up on your loved ones in spite of their condition. Share the love with them as best you can, until the end.
Black Bird
(05-10-2017, 01:47 AM)Raven Wrote: [ -> ]Barq:
- Don't let your Father's affliction shorten your Mother's life! She has some serious health issues that require equal attention.
- Take care of yourself! If you are making yourself sick trying to help, can you, in fact, really help?
- Choose your strongest ally (hopefully allies) amongst your siblings and work with them. Don't try to sort out everything yourself.
- When the time comes, if a decision must be made to place your Father in a Nursing Home, then don't beat yourself up about "putting Dad away". That emotion is misguided.
Thank you Raven. I appreciate you time and thoughtfulness. On the bulletpoints...
1) I think we will be ok with this - she is definitely getting good care from us and the professionals. Obviously I am assuming no complications, so if her recovery took longer than expected we would run into problems because I think our coping resources will run out at some point (which leads to your next point).
2) You've rightly my (or my siblings') wellbeing as an issue. I'm seeing my doctor in a few days because my blood pressure is far too high for my age, weight, and lifestyle. What is interesting is that we've all tried to hide the emotional and physical exhaustion from our parents, but they've started to notice. I cancelled a holiday because I had to be there. I tried to avoid mentioning it, but eventually she asked me outright and I'm not a good liar.
3) Good advice - thanks.
4) I need to remember this for the future. I think the question of a nursing home is more
when rather than
if.
Thanks again.
Take care of yourself too,
barq
yeezu86:
Post any questions you may have here on this thread. There is still so much that we don't know about Alzheimer's - Dementia - Parkinson's diseases. Get your post count up a bit more and we can discuss things by PM if you like.
We all seem to realize that Cancer is a horrific disease to deal with, particularly because it effects both young and old. That said, these diseases of the mind, which typically effect people in mid-life or the elderly, are equally tough on families. A diagnosis of these diseases of the mind results in what I refer to as "Stolen Time".
I Wish you the All the Best
Blackbird