Hello, my father has dementia. It has been a long and difficult road. He lives at home with my mom and is under hospice care with a caregiver that is there for him 6 hours per day. He is at the point where he is bedridden. He sleeps most of the day and whispers and whimpers. I confirm he feels no pain with hospice and he just seems dazed. I want him dazed and unaware so he does not realize he is dying. My dads wishes have always been to die at home and to be buried in a National Cemetery... I have made sure he will have both.... however I use to visit my parents every Sunday for the entire day. I did this since I married and left their house. I did it up until quarantine. I havent visited since Feb to be safe... but I am on top of his care daily. I have a young daughter and I’m trying to give her a lot of attention because in the past I was always so busy. I feel some guilt because I may be using quarantine as an excuse to not face my dad during this ending stage. I arrange everything for his care... I send them groceries weekly... I handle everything for them... hospice, bills, caregiver, medication, make sure they have food and water... treats... I have arranged where he will be buried... how it will be handled... but I can’t get myself to visit because I cry and get so depressed that I can’t function... I went through this for the last 10 years with my dad... does my inability to visit now mean I’m weak? Am I terrible? At the very last stage I will be there... but I can’t handle it right now and I've made sure he is taken care of. Am I horrible?
was he abusive? I can’t see my mother anymore for various gut wrenching reasons....... therapy has helped me start to figure out why. Good luck.....stay strong....
Some of us believe that we will be going to a better place and our loved ones are going to be there.
In our dad’s last week at home, I got a portable record player ($40 at Walmart) and we played his vinyl records ~ Frank Sinatra, McGuire Sisters, swing music, John Philip Sousa, classic broadway musicals, and records from dad’s service academy (Coast Guard) musical groups. My brother and I also treated him to a swab dipped in bourbon (his favorite!) on his lips. Although dad was incoherent, he definitely reacted to the bourbon in a funny way. It was a shared humorous moment that we will always fondly remember, despite dad’s being near death.
Your mom may need someone in her corner too....
A lot of us on this forum have been through this as well. It is so hard. very hard. but it comes down to life, and life engulfs, from beginning to end.
please try to gather the strength to see him, mom, family, and friends, before the end.
You will be okay. You will be surprised by the calmness and stability you will have when you do. it will be ok whatever you do. your dad loves you, and you both know it.
You have to do what your heart says, and feels right for you. Just let it be KNOWN: IT IS OKAY.
Go See Him.. You will NOT REGRET IT.
Put a SMILE On your Face, wipe those tears, hold your head up, HOLD YOUR HEAD UP...
SHOWING EMOTIONS IS NOT A SIGN OF WEAKNESS.
Embrace this with your family and your friends. IT WILL BE OKAY.
YOU WILL FIND YOURSELF STRONGER THAN YOU EVER THOUGHT.
TAKE A DEEP BREATHE AND WALK IN - JUST WALK IN. SMILE AND THANK HIM FOR YOUR LIFE, WHO YOU ARE, AND YOUR LOVE. TELL FUN MOMENTS AND STORIES, AND ESPECIALLY THE HEART FELT FUNNY ONES.. :)
Does he have a favorite song? play it for him.
Tell him he is not alone, you love him, and it is okay... HE IS OK.
so, some people pass when alone Some people, prefer that. My mom was basically "calling me to come back, she was going" got in my car, and there was an S LOAD of texts from my sibling.. MOM IS GOING COME BACK NOW.
It is usually a 3 minute drive.. got there in one minute... I missed her. nurse and sibling counted it down that she died when I walked in door...NOPE, it happened when I was watering the plants she gave me. She told me, come now, come now, I am going.. I "told" her to wait, I am almost done. When I started watering the lawn, she "called out" I am going, come now.
I was up all through the night with her before, worst night in my life - hospice left me. nurse gave me directions on how to crush and slather pills in her mouth... :(
when i threw down the hose and headed to my car, I saw my cell phone was just blasted from by sibling, "she is going, come quick" basically those words..
Rest assured that are are giving yourself to, and helping, your dear parents. I have compassion for you as my dear Mother suffered from dementia and Alzheimer’s and yes, helplessly watching deterioration for anyone, especially those we love, is extremely hard to watch.
By posing this question of guilt makes me wonder that perhaps you have answered your own question. Big hug here. I believe that guilt is part of our morale compass and I just wouldn’t want anything to happen to your Dad, or your Mom, with you feeling uneasy though please carry with you that you have taken excellent care, and showed loving concern and compassion, to your parents.
Perhaps going over there, if safe virus wise, a few times per week, staying for whatever timeframe you deem appropriate (an hour or a few). I’m sure your dear Mother would appreciate the moral support. I know this is difficult, to say the least, for her as well.
You can get advice from hundreds of folks, but in the end, you have to make the decision best for your situation as you are the one that looks in the mirror at your image and you need to be happy with what you see.
I was married (not first marriage) for a month when my then 85 year old mother moved in with my husband and caring for her was one of the most difficult things I have ever done. Her journey ended in January (thank you Lord). Do I wish at times I would have been more patient...heck yes, but the big picture, I am proud of what I did and I am left with “it was an honor to care for my Mom”.
There were so many times when I thought “I just can’t do this anymore” and you know what? I did!! And you can too, in whatever capacity you come up with. I remember posting on this website a question to the same effect. “Am I terrible because I just want this to end,” - I would receive support from folks that knew best as they were going through it, folks on this forum.
Hang in there - you’ve got this! Rest assured that this part of your journey, as all parts, has an end.
I think your mother could perhaps do with seeing your face. No?
For myself, with a Dad I so loved, I would have, had I had the opportunity, gone to see him that last time, masked. Told him how much he meant to me and how much I loved him. It would have been important to ME to be able to do that. But each individual tries on their own.
Has hospice given you any suggestions or guidance in this?
I could not be with either parent at the moment of death due to suddenness, nor with my bro in May due to covid times. Had I opportunity, I would have taken it. As I said, it is up to each individual. Clearly you are a loving and caring daughter. THAT isn't in questions at all.
YOU ARE NOT TERRIBLE...
The quarantine is not an excuse because the virus is a serious matter. You are doing the right thing. You are just protecting him; the thing is we don’t see the virus and we don’t truly know who has it because some people are asymptomatic (don’t know if I spelled that correctly).
I am a caregiver that works in a carehome. I have two hospice clients. One of my clients’ family stop visiting in order to protect not only their mom but their mom’s caregivers. Your Dad’s good heart will understand why you can’t come and see him. Do what you think is best for you and for your Dad, with everything you mentioned in your post I do think that although you can’t see him in person, you are still doing the best you could to give him the best care possible.
And as far as being weak - you can only handle what you can handle. Be there when you can, and don't feel guilty for what you can't do.
There's a saying I saw years ago and it has stuck with me:
Do you best
Leave the rest
Angels do no more.
(((hugs)))
No one with a heart wants to see someone they love in pain or dying.
Now I am hoping not to rub salt into your wounds but...have you visited your mom? She needs you as well. Your dad may not realize even if you are there but your mom knows you are not.
Can you arrange to meet her during some of the hours that the caregiver is there? Meet at a local park or outside spot and have a cup of coffee? (wear masks and social distance)
Seeing your mom might make it easier for you to see your dad when you are up to it.
Believe it or not there are times when someone is in the condition your dad is in that there can be some happy, joyful moments. I have a few photos of my Husband laughing that I will cherish and I took them between moments of sleep. (thinking about them brings tears to my eyes so thank you for the memories)
Again YOU are not horrible this disease is horrible.
We need to do what we can. As others have said maybe just being there for mom will help all of you.
I think in these times we really need to ask ourselves how we will feel later. Don't not do something that will cause you future grief or regrets.
You have little eyes on you, be sure and set the example that you want her to have, whatever that is. There is no right or wrong here.
I am so sorry that you are losing your dad. May God grant you grieving mercies and strength during this difficult time.
I could not bear to see my mom in pain, physical or psychic. I promised her ONE thing, that she would die without pain, and I needed to be there to make sure she went out on a cloud of morphine.
Staying all day is not what is needed, but your MOM needs a break, even though she's got help.
How about showing up when the aide is there, checking in briefly on dad and taking mom out for ice cream?