My 64 year old grandfather was diagnosed with dementia last year. However, our family doctor told me and my mother (his daughter), and we haven't told my grandfather. We weren't completely sure he had it, which is one of the reasons we haven't told him. However, the last 9 months have been really hard and stressful. We are certain it is dementia, and he doesn't know he has it. He is taking Aricept, but he just thinks they're everyday pills. I think I have heard him say they're for his memory, but I don't think he quite knows what he has. He has good days and bad days. He can remember things from years ago, and days ago, but not so much the current day, like, what he had for breakfast. He can't remember phone numbers, or his pin number for his banking information. Mine and my mothers concern with telling him, is that it could worsen the symptoms. I know it's not fair that we keep it from him, we just aren't sure how to tell him or if we should. Should we have our doctor be in the room when we tell him? My mother and I just need some information on these topics. Thank you for your support and information.
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Last year, before she had a brain hemorrhage, she used to say I have "bemuddled brians" and would call me in the middle of the night and be afraid because her lips were numb. I suspected a problem with her brain. After she called with symptoms of a sroke, I made the trip to be her and get her help. I had to call 911 from Washtington State to get her help in Florida!
It is been a year and five months since that first episode and she has been in and out of the hospital and rehab a couple of times since then. She now doesn't remember any of it happening. I eventually had her moved to a nursing home because I feared for her safety and well being.
I continue to tell her the story of the past year and a half so she understands why she is living in a nursing home. Unfortunately, since she now feels physically better, she wants to live on her own. She can't accept anything ever happened to her. I call her everyday and the conversation is always the same. Help me get out of here, I hate these people and food is awful. She won't let anybody touch her. Thank goodness we did all the POA, Health care surrogate and bank stuff before the first stroke!
I have had her examined and evaluated by a geriatric physchiatrist and her regular doctor and both agree that she cannot function independently. I don't know what if anything they told my Mom. They don't communicate with me at all. Her original doctor wrote up a report saying that she has dementia and I used to consult with him before she moved into the nursing home.
I continue to reassure Mom that she is not crazy but the strokes (actually had two of them) affected her memory and speech center of the brain and that is why she gets confused sometimes and can't find the right words to say. I know deep down she is angry and frustrated about her condition and feels helpless to help herself. She wants so much to be her "old self". Me too. Good luck. There are are no easy answers as the previous poster mentioned.
I understand your dilemma but there is no easy or right answer, I don't think it matters that much now. Good luck with whatever you decide to do x
On the other hand, if my husband has 3 worry cells in his body I've never seen him exercise them. He was an engineer. He wants facts. The type of dementia he has fluctuates from day to day, and when he is "with it" he can't help knowing that something is radically wrong with his thinking ability. Keeping the truth from him would be just as cruel and upsetting as forcing the truth on my mom. Since he was first diagnosed he has known that he has Lewy Body Dementia. It is something of a relief to know that there is an explanation of the weird things that happen. We have kind of personified the disease, as if it is a force that has come to live with us. We call it Lewy. If we play a board game and he has a lot of trouble with it I can say, "You know, I think maybe Lewy is playing your turns today. Let's try to sneak in a game tomorrow without him," and we can laugh at it. Or I can say, "I know that you can carry a full tray very well, dear. You've done it for many years. But I'm worried that Lewy will get mischeivious and make you spill something. Let me carry this across the room for you." None of the dumb mistakes or memory lapses or clumsiness is my husband's fault -- we know he is a smart man with a good brain. But Lewy doesn't always let all parts of the brain work right now. As a caregiver, this approach is very much easier on me. But if I thought denial were best for him, that is what I would do, without hesitation.
I don't necessarily share every detail with him, nor does he seem interested in knowing. I held a family meeting this summer. I explained to him what we were going to talk about, and that he probably would be "bored" with that much talk about Lewy. He agreed. So we met without him and he joined us for dinner afterward.
I don't think it is a question of what is "fair" to your father. It is a question of what is in his best interest. You and your mother are the people who can best predict his reactions, and know his preferences and coping style best. It is a very hard decision to make. Discuss it with your mother. Give it your best thinking, without regard to what you "should" do but with what is best for your father in mind. Make a decision in love, and then move forward. Don't second-guess yourselves or beat yourselves up with "what ifs." Do your best. Move on.
I wish you the very best in this journey.
By the way, since your dad has clearly declined since the original diagnosis, it may be a good idea to have him see a specialist such as a geriatric psychiatrist or a nuerologist who specializes in dementia. Depending on symptoms, there may be drugs in addition to aricept that would be helpful. There is no cure, but there may be opportunities for improved quality of life.
Now if the word is important because he will inevitably hear it from others, or because it will be his only cue to make arrangements that he still needs to make for POA and other supports, then by all means have a meeting. Probably let the doctor tell him, so you can be there as support and reassurance that you will all still value him, and love him, and be there for him all the way.
I can tell you the fear of taking away hope or increasing depression could be realistic. I know my mom went downhill faster once she realized she actually would not be able to return to her independent living in her own home, even though she would still frame it terms of not being able to walk, and still said, "well, maybe you can find me an apartment here..." It's hard to know what is really right and best at times, and I was suprised that I found myself not necessarily telling Mom everything we knew was going on, but just what we thought she could absorb and would be able to grasp and use in some way. But I could not bring myself to tell her some things that I could tell would be more devastating news to her that she might not be able to handle. When she had a heart attack - actually her third one, but the first one that was painful for her - and her coronary arteries were found to be inoperable, she asked if it meant she could die, and I did tell her yes, it could, though the doctors were quick to say some people lived quite a while with medications, etc. with it, and we would hope for the best. And yet, I never quite told her that we actually had to "sell" her house - only about a year and a half after the fact, when she said she did not think she could go back and be on her own there again, I told her that another family was living there and taking care of it for us, so she did not have to worry any more. (Then of course she worried that they would be upset if she ever did get well enough and need to move back in.)