Parents with Dementia
I would like to hear if anyone on this board has a parent who suffers from dementia. My father suffered his third stroke about six weeks ago. Whereas his first two strokes permanently limited his mobility and strength, they left his mind largely intact, this third stroke has stripped him of language and much of his reasoning power. His brain is damaged to the point of dementia now. In many ways, I have lost the man I knew. The life he's living now is horrific...I can't imagine what his subjective experience is like. I'm experiencing grief, but it's complicated by the fact that he's stuck in this miserable half-life. Any suggestions on how to emotionally survive this would be greatly appreciated, because I'm feeling rather overwhelmed by the horror and pity of it all.
I'm very sorry to hear you're going through this. My father is now well into the early to mid stages of dementia (his brain damage almost certainly caused by a lifetime of chronic alcoholism) and it's alarming and upsetting and hopeless. I'm sorry I don't have any practical suggestions for you. I don't know what to do either. He has suggested to my mother that they both kill themselves (my mother is healthy, happy and vibrant in her mid-60s) and I am sick at the thought they might become murder-suicide statistics.
ETA: On that cheery note, I'm off to bed.
I know what you're going through. My dad died in January, after endurng three years of dementia. I don't know what to tell you, except that you've been given time to prepare yourself for what is inevitable. I can't sugar-coat this. There isn't anything good or inspirational to say about the situation, except to take the flashes of the father that you've known that he'll show you to heart before it's all over.
My mother had dementia, but not on the same level as your Dad's -- she could still talk and function independently (with a lot of support).
Mom died of a stroke in April. She had been having TIA's for years and her brain showed the effects of this. My kids would say, "Grandma always says things two times" -- and that was an understatement. More often than not a conversation with Mom would consist of the same story or concern on her part repeated ad infinitum. Initially this was extremely distressing. Eventually though as we came to terms with the new Mom, there were some humorous aspects to it at times, like when suddenly she would introduce something new in the recitation, even the opposite of what she had just said four or five times over! Or the fact that you could tell her the same little joke or story repeatedly and she would keep enjoying it just as much. Or the fact that sometimes when you did this, you were met with discreet silence, because she did remember you already telling her that and was thinking to herself that you were really slipping.
What was in some ways more difficult to deal with was the uncertainty about her safety, living alone, having to administer multiple strong medications including one by injection, and occasionally prone to wandering.
For me personally, I sometimes deal with people with severe brain damage through my work, so that may have made it easier for me to get some distance and start to interact with her on a different level. There are so many practical things that need to be done when caring for someone who is mentally impaired, and by focussing on that I think it helped a lot.
Just as a suggestion, you might want to stop by the local branch of the Alzheimers' Society and talk to someone there about your concern about how to support quality of life. They are super-helpful and there is lots of good research on this they can give you. They also run or could hook you up with AH support groups where you could pick up helpful ideas from others who are dealing with the same kinds of issues.
It's also really important to make sure your Dad gets a good physical to rule out any contributory effects of eg medication, diet / hydration or untreated health problems. They can also prescribe anti-anxiety medication and anti-depressants, some of which also work as sleep aids as well as reducing physical aches and pains. In my Mom's case they were even able to reverse a certain amount of her cognitive decline for a year or two through a new memory drug. There aren't very many gerontologists around and we never managed to access one, but that would be ideal. It is extremely comforting to know that your family member is under competent medical care.
My father is inlate stage Alzheimers'. We started noticing it when he was 58, and he's now 63.
Early onset seems to move faster than the more traditional 'elderly' onset. Traditionally (there's no 'normal') first stage takes 9 or so years, he did it in 18 months.
My father was a nuclear safety engineer, brilliant man. While he'd been able to retire for a bit, it wasn't until my mom pointed out his memory issues and her concerns he went on immediate sick leave and then retired.
It is amazing how humour does become your main coping mechanism.
I try and back-up my mom as much as possible, and it do find it interesting as she seeks to cope, having lived under the assumption of a "safety net" for such times.
Each person's experience is so different and I take each visit, each issue on a day to day basis, enjoy the time I have with him and pull every string I can for services for them.
As an activist I use my personal experience to draw attention to the gaping hole in services, the dismal pay and working conditions of the PSWs etc. In fact one visit my mom complained at me so much I put her onto our Labour Council president and he came out and met with her support group so they knew the issues.
I went down on Canada day and spent the time with my dad because her PSW wasn't allowed to do relief on the stat and her class was still going. Issues such as that make her mad, so I educate her on that issue.
So sorry you are going through this. My mom has Alzheimer's. Last fall, I had to confront my family about their denial of the situation, and do whatever I could to get her into a safer situation. It ripped me apart. I'm still recovering.
I'd say the main thing is to take care of yourself, give yourself room to grieve. Find others you can talk to. Starting this thread was a very good idea!
Check out http://www.alzheimer.ca/english/index.php
http://www.alzheimer.ca/english/forums/intro.htm
My mother's functionality took a very hard hit after receiving a medication for mini-seizures she was experiencing. She did not recover from this, and we saw in one month what I expected would happen over two years.
You just do the best you can, and understand that there won't be a magic pill that will bring the person you knew best back. Get to know the person who is now. There can be some lovely surprises.
Michael, show your father love, not pity or horror. It will benefit you both.
I nursed my mother for 2 years after her main stroke, and after other small TIA's, she was left much the same as you detailed your father.
Often throughout the day, I would curl up beside her in bed and just hold hands and snuggle my head into her shoulder. And without fail, she would respond positively back. It decreased her sense of aloneness and alienation from the physical world. It also gave me peace, and wondeful memories for when she was finally gone completely. That was the position we were in when she finally let go and I would not trade it for anything in the world.
Do not waste the bonding time, now available to you, it will help to carry you through your later and more intense grieving.
All we have left in the end is our love to give, and really that is all they want, plus the acceptance of theirs.
And yes, writer is correct there can be some lovely surprises.
Way too emotional for me still after 4 years....
Thank you, everyone.
This is a subject that is very close to me, both emotionally and physically. My father has been sick for many years, since I was a teen, and likely before but I can't remember a lot of that. He is suffering from a mental illness which shares many features of dementia. He, too, is in a decline and likely would be diagnosed with dementia if he went to the doctors. He is "independent" in that he can live his life without support (and he is obsessive about the financial things in his life so we don't ever have to worry about poverty) but he is essentially a shut in who doesn't take care of himself or his house. He has a very set routine and when anything in that routine gets out of whack, even going to the store on a different day, he gets confused and disoriented. He gets very angry if there is to much interference in his life so our ability to help him is limited.
When he starts verbally attacking me I have to sit and listen knowing that this isn't who my Dad really is and if he were able to he would never treat me the way that he does. I wish I could say I was perfect every time but it does upset me and sometimes I have to stay away for periods of time to make sure that I don't go see him without being capable. For he is very fragile under all the anger and has tried to commit suicide several times.
Sometimes my Dad is very clear and I can see who he was before the illness, just this fathers day we were able to go out to a restaurant and he was happy and excited to see my brother and I and didn't seem confused or disoriented at all. But I just phoned him up last week and told him I would be near his house and asked if I could drop by and he got very upset and said that I couldn't come but I could hear him reaching to remember why I couldn't come (sometimes there is a real reason that he can't remember and sometimes it is just his brain tricking him into thinking there was one but he couldn't remember).
The way that I cope is to make sure that when I go see him I am happy and okay. If I am upset about anything in my life that I can't hide it I don't go because he picks up on that and it makes him really anxious and upset and he usually ends up exploding about some thing or other. I also remember when something does happen the times that I know the person that my Dad was and would like to be and the fact that he has turned out this way is just as painful and upsetting to him as it is to me and that he too feels hopeless, lost and scared only he doesn't have the ability to use his mind to help him cope with it.
One thing for me is the hard balance between not helping out enough and helping out to much. Sometimes his explosions are when I am overstepping my bounds and doing to much for him because he values his independence, more now than when his independence was taken for granted and I have to take a step back and realize that he is still a capable person in a lot of areas and my need to help him and make things better does not outway his need to be a capable person. Also it is hard to step back and let him suffer because of his illness, I almost want to protect him from the confusion and memory losses but by doing that I am not allowing him to feel his life for what it is and develop what coping skills he has. He gets confused if he goes shopping on a Wednesday and not a Monday so he has developed the coping skill of just going out on Monday's. It isn't the most functional of things if he runs out of milk on the Wednesday but he makes due and feels like a more capable person by setting up his life that way. And it won't kill him if he doesn't have cereal for four days.
I come at this with the experience of having dealt with this for more than 15 years and more than half my life so I am at a different place than someone who is just starting to deal with the factors. I am also dealing with a very slow, long term decline, rather than a rapid onset so my experiences may be different than many other people who are dealing with a different type of dementia or dementia related illnesses.
It is a tough long road and I am finding out more about myself and my own faults and capabilities than I think I could any other way and dealing with this for almost my whole life has made me a stronger person and a better person than if I had a father who was "normal". Would I trade him for a Dad that would have interrogated my boyfriends, been able to stay at my wedding for the whole night instead of just 2 hours, would love to hear about the move I am planning to make or the guy I am thinking about getting serious with instead of having to wait until after the move or after the decsion to tell to avoid his anxiety about changes? I don't know, I guess I would leave that up to him. But he has given me so much and is helping make me the person that I am, maybe not the way he would have wanted to do it but in the way that he can.
My ex's step father, who was more her real father for most of her life, and hence, my daughter's grandfather started exhibiting signs of dementia some time ago. With him, it started with being lost for a word in the middle of a sentence-- like what happens to any of us from time to time, but this became chronic until he just started withdrawing from conversation altogether. Then, he'd take double doses of his insulin sometimes, until my former mother in law started locking it away. His dimentia isn't alzheimer's, but it's very similar.
About a year ago, they decided he'd be better off in a seniors fascility. Since then, because of the special care he receives-- mostly artistic stimulation-- he's much better. In fact, one of his paintings is being sent to France for use at a war memorial museum, and he's back playing the clarinet, and my daughter's tell me his conversation is excellent, almost normal.
I don't mean to raise any false hopes, here. Obviously, the type of dimentia my former father in law suffers from isn't as devastating as alzheimers, or a major stroke.
But, things might not be as bad if the right care is found.
Again, thank you, everyone. It's so good to be reminded that I'm not alone in this experience. I mean, I knew I wasn't, but I really needed to connect with others who are going through it. I particularly liked remind's point about replacing pity and horror with love. Love is the backbone of courage and compassion, and it's good to remember that.