My father is extremely beloved among his friends - his peer group is comprised of people whose careers he launched and supported, and those who did likewise for him. Their relationships span about 30 years, and his gaggle of closest “favorites” dote on him with birthday get togethers and celebrations. Not anymore, though. His world is shrinking, and his mobility issues aren’t helping when it’s hard to get out and around.
Only a few people know of his currently declining health, even fewer know of his dementia. Nobody, beyond my mother and I, know how seriously bad it has gotten over the past few months. Incontinence, jumbled words, not making sense, and inability to perform habitual things like brushing teeth or, sometimes, walking.
He’s still so lovely, gracious and kind. I know we are blessed that his core personality is that of a good, nurturing person - it seems rare to have that as a default setting. ❤️
So - do you tell those whom he once loved and cherished, people who shared the same affection and admiration for him - do you tell those people WHY they never see or hear from him anymore? He’s like a father figure to some - do I have an obligation to let those closest to him know so that they can see him for what may be the last time before he disappears completely?
And what of his memory and dignity? I promised him I would always protect his dignity in failing health - but we never saw this dementia coming. We especially were NOT prepared for how quickly we’re losing him. My mother thinks it would be wrong to let people see him like this - that it would taint their memory of him. But these are people who love him, much the same way I do-something like hero-worship. (Yes, he really is THAT wonderful. No lie.) He’s made such a profound difference in their lives, so are we depriving him of something by keeping away people who want to thank him for the difference he’s made in their lives? He occasionally has glimmers of still being my dad, but also sometimes has moments where he’s very aware of all he’s lost. Would it be embarrassing for him to be seen like this? Is the risk of embarrassment worth it if there is the chance he will remember them and feel the love?
I truly have no clue. I’m helping my parents with this aging thing, so I’m living with them in what would have been a caregiver’s apartment. My parents have their relationship, and I am their child, so I defer to that primary bond. My mother has been with him for 60 years, so obviously, she knows him. But I know him in a different way, as my hero, for the past 50 years. I want to discuss it with her, but we’re both so overwhelmed by the daily declines, we’re a bit spun. And it’s not like I have a clear thought I can express b/c I have NO CLUE what is even going on with why this is happening so quickly. I thought we’d have more time. I’m hoping for some guidance from people who have experienced “coming out” with dementia. Is it a good or bad thing to do? What is the balance? Do you let them fade away as a perfect image to some people, or do you let them see him to say what is probably goodbye? All I know is that we are running out of time. I love him and want to do right by him. Always.
Question 1: Should you invite a given individual? - Will your father probably enjoy this particular visitor? If yes, yes. If no, no. Don't be afraid to be selective.
Question 2: Should those who love and esteem him come to see him? Prepare them for what to expect, and try to confirm that they understand the implications. Try also to discourage explicit farewells or leave-takings - thanks and appreciation can be expressed by their talking about what they're doing now with what your father taught them. Then leave it to them: don't blame those who shy away.
I felt honoured to be allowed to visit a very dear man who by that time was barely responsive, quadriplegic and needed routine suction. It was difficult to smile and be cheerful, but on the other hand it was reassuring to see how well cared for and loved he was. If I'm really honest, I felt I was there to stand by my friend, his wife, rather than for any good my presence could do him.
But I suppose I would like to think that my visit told him people hadn't stopped loving him because he was no longer the man he'd been. Or perhaps that the loss of his abilities didn't mean he wasn't still that man. My friend was sure he knew me; I'm not, but I don't think it matters. He knew that he was important to another person in addition to his wife and children and nurses.
Don't be afraid of what people might say. If there are unfortunately some who will talk ignorant or sentimental nonsense in public, they're going to anyway. Better to tell the truth and shame the devil.
1) you should let the others know about the situation, but you don't have to provide explicit details. Personally I knew little to nothing about dementia nor did I know anyone who "experienced" this before mom started down that path. I encounter so many now that share similar experiences, and everyone is nice and/or very understanding about it! Odds are that many of them are aware of or know someone in the same situation.
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2) leave it up to the others to decide whether to visit or not. Some may be okay with it, others might be uncomfortable seeing the changes in your dad. It probably would be best to keep these visits one-on-one so as to not overwhelm him, but since they have known each other a long time, they are likely still in his memory somewhere! For those who make the best connections with dad, invite them back often!
Stay there with him when the visits happen, so you can assist in directing how things progress - you understand his "jumbled" words or body language best, so you can be the bridge between him and his friends.
Although mom is not in favor of this, try to convince her to give it a try at least once, choosing someone he had the best relationship with for the initial visit. Explain how much this might mean for dad - he will more than likely remember these people and enjoy their visits even if he really cannot communicate well. Mom is forgetting recent events, repeats herself often, etc, but still remembers others who she had long time relationships with and enjoyed a visit with some distant relatives from Canada last year!
Keep the visits brief, and if she can see that perhaps these brightened dad up some, she might be more accepting of future visits from others.
Also reassure HER that there is no shame in this condition. He has no control over it just like he would have no control over any other medical condition. It might mean a lot to him to see his old friends and there is only one way to find out!
That said, all of the responses have been incredibly helpful. Thank you for taking the time.
My mother was a professional for about thirty years before she began her decline, but she refused to give anyone contact information for me, so when I began to notice that things weren't "right", and she refused help, I had to wait until I had an opening occur. My friends said wait for the "call" that she has had fallen, that she has set the house on fire, or that she has had a bad accident, then you will get the opening that you need. I had to wait twenty-two years for this to occur. People were already concerned about her, but could not reach me. She finally set the house on fire, and that gave me the opening. I didn't really have to "tell" anyone because they already knew. I was able to step in legally and "took everything away" and got a shell of my mother as a reward. She is doing better than earlier, and people who were concerned about her are kept up to date by me as to how she is doing. I have had her for more than three years. No one thinks that I have done the wrong thing by stepping in to help her. They knew she needed it long before I could step in. So did I.
Visitors may may be very therapeutic for your dad. Stagger the invitations so he isn’t overwhelmed.
Take care of yourself— it is touching, rare, and wonderful to read about your love and support for your dad. He is so lucky to have you!
We all hope one day that our kids will feel the same way!
By all means, invite the friends over and tell them to just talk about anything. Anything at all. I don't care what it is. Unless it upsets your LO., talk about it.
The office party of 1962, the flat tire they had. Almost anything. And take it from there.
I would "use" these friends to give Mom a break. Have one person come one or two days a week for an hour or two. Mom can get out and get some shopping done while Dad and friend visit.
Yes some will fall by the wayside but others will step up.
When you call to invite them over explain the situation and if it has been a while describe the decline. I would not leave the first time someone stops by just make it a short visit a cup of coffee, light lunch and a chat. If they want to visit again ask if they would feel comfortable sitting with Dad for an our or two so some errands can get done or just so Mom can have lunch with friends.
You are thoughtful protecting you dad. I think he may do well with visits. But if you do find that he is stressed make the visits shorter or stop them. Play it a day at a time.
Let the people choose to be or not around him, but give your father a chance to see them and enjoy others presence for could be the last time. It is the most difficult and challenging disease, we choose how to react to everything and anything that is here with us. This is the longest goodbye, we all have to deal with but given the opportunity savor every minute of it no matter how challenging it is.
I can't know what it is to be in that situation, but, I don't think that I would want many people seeing me in a state where I am not able to chat, don't remember who they are, display obvious cognitive decline, etc. I'd prefer to be remembered as I was during most of my life and not my declined state to be the headliner. Maybe, a close friend or two, but, no more. When people ask about me, I'd hope my family members would say that she's had cognitive and physical decline and isn't up for visitors. Cards and letters are welcome.I
I know there is no shame in dementia. I'm not implying that. It's just that I don't want dementia to define me and if people see that for the last years of my life, I suspect that it would.
I understand why Nancy Reagan protected her husband the way she did. But, it's a personal choice and I'd support what your mother thinks is best.
Loving child to your parents, indeed you are. Your father a great man.
Your father's dignity will remain intact as you continue to relate to your father as you always have. Always give him choice of decision though it looks as if you and or mother will have to decide or have final say for what's best.
Those of his circle of influence and his friends, if they ask about him, tell them. For those who desire to visit with him, be selective. Always be truthful, real and down to earth with them of his situation. No one needs to know the explicit intimate details. After you let them know, let them decide if they still want to visit.
At your father's stage he could at least be "familiar" with the visitor or could recognize them! There's the possibilty too he may not respond at all. I think he would be responsive in some way, especially to someone who has been very close to him. In any event, it can be a plus for you all and or you & mother.
Be very strict with who, when, and visitation time. And be sure to regulate quantity of visitors.
Blessings