Hi everyone, my dad recently graduated hospice yay ! They said that he’s not declining it’s great news! Now that their gone I’m so afraid that he’s going to decline . He lives in a nursing home with dementia and is bed bound. I feel like part of the reason he is doing well is because he had more social interaction with people other than me with hospice coming in to bathe him ask him how he’s doing saying hello I don’t doubt that the staff in the nursing home are nice to him like this I know they are but the more visitors for him the better he feels I can sense . Unfortunately his family are not the best people and only came around in the beginning of his hospice journey because they thought understandably that he was going to pass so I can’t count on them coming to see him (I’ve even texted them letting them know that he was asking about them and if we could set up a date for them to come see him they live 30 mins from him and they ignored me wonderful people) my older brothers both live far away so they come once in a while to see him so it’s just me …. That in and of itself is stressful because I try to be there everyday but obviously you can’t always do that you gotta do stuff around your house cook dinner go to the gym social things so having hospice was great . Also I wanted to ask how does everyone deal with their loved one having a bad day? For instance today when I saw my dad he was so tired and not talking a lot it makes me so sad every time I almost can’t stand seeing him like that . I know we all have tired days it’s just so hard I don’t know how to deal :(.
Long ago my grandfather had someone like that after my grandmother died. He was lonely, and he just wanted someone to chat with and take him out for a ride in the car a couple of times a week. The guy who was hired was older and pleasant and happy to have the extra money. I think the guy's background was work in a hospital when he was younger.
To be frank, elders get quite tired of life. My father explained it as longing for the long long nap.
He had a wonderful life, but was ready to go. Got quiet. Longed to stay in bed. Not depressed but just over it. As a nurse I heard this many times from patients who lamented their inability to discuss this with their children, as their children "wouldn't hear it" from them. They would try to go into denial.
Much of this is age and situational depended. Your father may well be just tired. The sad truth is that while Hospice may have left and may tell you he isn't terminal, he may WISH he was. My advice is to talk with him, and don't negate his experience. Some of my best and most meaningful talks with my dad about his life/our lives, occurred after I recognized he was approaching the end, and willingly.
Watching someone with dementia decline is like trying to watch a beach erode. It is sometimes so slow and unnoticeable. Then you compare a photo from a year ago and today and you realize how much has slipped away.
And dad may be able to hold it together for a quick visit that "perks" him up but the aftermath of that visit is sometimes felt for a day or two.
It is exhausting trying to hold it together. A 5 minute visit might require a 5 hour nap to recover from.
The day you see dad and he seems tired...that might have been the day that the Nurse saw him, the CNA gave him a bath or shower, the bedding got changed, that is a lot of activity to recover from.
If people do not visit because he is not dying fast enough for them that is on them. Just keep lines of communication open. If they want to be informed there is a place to do that called A Caring Bridge. You can post updates and family and friends can communicate with you. Some Hospice also have Apps that can allow information to be shared with family.
Hospice also has Volunteers that can come and spend some time with him. I am sure the facility he is in the Hospice has other patients as well and often a Volunteer that visits one will also arrange a visit with another patient on the same day. It is worth it to ask if you would like another visitor to stop in on days when you are not stopping in.
Does or did your dad belong to a church in the area, as often they will have some of their folks come weekly to visit? Or if you have a Shepherd Center in your area, I know that they have volunteers that would come and visit him as well.
You can also hire(with his money)someone to come and sit with him a few hours a day to keep him company if that makes you and him feel better.
You cannot and should not be their every day as you have your own life to live and enjoy, and you are not responsible for your dads happiness. If he's having a bad day, let him have a bad day. We all have them once in a while.
And remember that just because hospice said that your dad was no longer declining, doesn't mean that he can't go back under their care in the future when needed.