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I don't know if this really counts as "new to caregiving" as I'm not the primary caregiver, but I've come across this forum in the past and I wanted to see if I could get some advice from experienced people on what I should be doing.
My father is 79 and has dementia. He was doing very well living at home until a month ago when he developed pnemonia, resulting in two hospital trips. Since then, he has declined a lot. He is a major fall risk and can essentially no longer walk. As a result, he has been moved from the ER to a skilled nursing home, and he also contracted C. Diff as a result of his pneumonia treatment.
I'm honestly really not even sure what my question is. I guess I just want guidance on what I can actually be doing for him. I want to be able to cheer him up and just show him that I love him, but I don't know what to do with myself. And any advice on coping skills or coping resources would be extremely appreciated. I can't even visit my dad right now because of the c. diff.
I'm 26. My parents had children very late in life, and my mom has some kind of untreated bipolar disorder and is very volatile and unpredictable, so I can't really talk to her about this. No one my age, no one I know, has experienced this, and it's been incredibly isolating. My husband is trying his best to support me, god bless him, but his parents are both 20 years younger than my dad and it's hard for him to really understand. I think I really just wanted to put this out there to people who have experience with aging parents. It's a very broad question, but any advice of any kind; things I can do to help my dad, anything that helped you with this painful transition, would be very appreciated.

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I am so sorry you are going through this! My father, who is almost 95, has had cdiff with recurrences and some other similar experiences as your father. Although my dad had not been diagnosed with dementia, I have noticed some declines in the last months. When hospitalized (twice in two months), he developed what they call hospital delirium. It seems like dementia on steroids, in that suddenly dad would have really really “out there” stories of things he thought happened in the hospital and the SNF, hallucinations, confusion, ill temper, etc—most of which he had not displayed before. Likewise, when he arrived at the SNF/rehab recently, it was even worse and more continuous than it had been in the hospital. I have read that people with dementia are prone to this type of delirium. For my dad, the extreme stuff passed within three or four days after settling in at the SNF. However, the hospital doctor told me it could last two weeks or more…Perhaps the sudden decline in your dads cognition could be something like this?

I would follow the SNF directions about isolation for cdiff. Although I have dealt with it in my home with dad, it was knowing that it is very contagious and I used full PPE when cleaning up thoroughly with appropriate cleaners. Being a teacher, I know you want to be especially careful. I’m a little OCD about such things, I wouldn’t think it inappropriate to ask at the SNF what procedures they are using before you start visiting in person and when they would consider it “safe” for you to visit, explaining that you teach and want to be careful for your students.

As for supporting Dad, I brought mine soft blankets (he is always cold), snacks he likes, bottled waters, and when I go see him I bring him coffee (he loves coffee and in the SNF has to ask for it which can be hard sometimes). He has a hard time with his cell phone (very poor vision), so I set it up with colorful icons with main contacts names in them, so he just has to touch the icon he wants to call. I did see some phones sold on the Alzheimer’s site that had spaces where you could place peoples pictures that the user could push to call—looked really handy but a bit pricy….something to consider?

I hope he feels better quickly and you will be able to see him soon and know he is well cared for! But if I may, please be a visitor, but avoid being a caregiver. It is an all consuming and grueling undertaking that can quickly morph into a situation you could never imagine with no easy solutions. Love your parents, support them with healthy boundaries in place, and live YOUR life.
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Reply to Hope21
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Get your mother’s sisters involved in supporting her now. Don’t wait for a crisis. And don’t count on relatives to help unless you have overt conversations about what is the situation, the expectations, the ability to help, the commitment. Your mother’s sisters may know her way too well and are not interested in helping as much as you think. You need to adjust your life so that you are not the fallback solution or plan. I suggest reading about family enmeshment and emotionally immature parents. You are not responsible for your mother, or your father. But there are plenty of people who will make you think you are. I suggest not living too close or being too convenient. What are her sister’s plans for your mom if she can’t live on her own? Good to find out now. Are you the plan? She may need inpatient psychiatric care for medication adjustment. Long term care because she can’t live alone. Help find a solution but don’t be the solution. It’s not selfish, it’s self protective. For you.
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Reply to Beethoven13
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Just continue to have the same kind of relationship you've always had with your dad. Some of us are closer to parents than others. Whatever type of relationship yours has been, continue to show up for him, talk to him - the same way you would if he was not in the hospital or a nursing home.
Bring him some snacks that he enjoys, bring a puzzle book, or books for reading, depending on what he enjoys. Bring a few (just a few) family photos for him to look at and be reminded of people he loves. Bring him a comfy blanket and/or pillow. When my husband was in a nursing home, the pillow they provided was covered in plastic, which was old and cracked. Yuck! So, I bought him a nice, soft pillow of his own. I also brought in a throw blanket, a wipe warmer, some family photos.
Just spend 15 minutes, or 30 minutes, or an hour, whatever your schedule allows, to hang out with him and talk with him. Take him outside for a walk in a wheelchair, if he can and wants to.
Don't try too hard to "cheer him up". His situation is not pleasant and he does not need to be cheery about it. Let him complain. You don't have to answer his complaints, or try and fix it for him, but just listen. If he manages difficult times with humor, then joke and laugh with him.

If you're looking for coping resources, try typing ANY subject into a YouTube search bar or even a Google search bar. You will likely get a bunch of helpful information returned. Both have helped me a LOT!
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Reply to CaringWifeAZ
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You are very welcome! You can also reach out to the social worker at the facility for ideas as well. The social worker at my dad's facility just told me that dad seems depressed and he is changing some cognitively. She said they were going to try to encourage him to join in more activities that they have.
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Reply to faithfulbeauty
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My dad also had me very late in life. He went into skilled nursing when I was in my late 20s. My mom also has mental issues (volatile and unpredictable) that at that point were untreated. I did not have a healthy view of my situation in life and how best to balance my own life and sitting with dad at SNF for hours each weekday while mom worked. My mom took advantage of me and put me through far worse than I should have endured. I should have gotten a job or volunteered and not made those years about my dad leaving my own life in tatters. I was far too invested in his care and had no idea my mom was NPD and down right toxic to my mental and physical health. I almost lost my home after my husband lost his job and I was too busy with my dad to get a job and contribute. My advice is to read the book Boundaries, set solid boundaries with both parents, get therapy and greatly limit your interactions with both. Trust me, when they pass away you are going to be a shell of a person if you are only living for them. BTDT. You need to sit down and figure out what you want your life to look like in 5 years and start moving in that direction. I was pushing 50 before I went low contact, then no contact with my mom. I mourn the years that I could have had peace and happiness rather than abuse and pain. Do not see yourself as dad's or mom's savior. You cannot fix them or make them happy at this point. That is a failed attempt that will only bring you sorrow. Do what you can and lower the bar on expectations for yourself when it comes to dealing with your parents. I hope you can find joy outside of your identity as daughter.
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Reply to JustAnon
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ButterflySnail 20 hours ago
I am so sorry that you had to endure such a painful time in your life. It does bring me some comfort to hear from someone who experienced a dynamic so similar to mine.

I have seen that book recommended a few times on this forum, I'll have to pick it up. I am extremely grateful that, for all my mother's flaws, she is still taking responsibility for my dad's care and not putting that expectation on us kids. At least, not right now.

I have spoken at length with my therapist about how much guilt I feel continuing/moving into the next stage of my life when my father is transitioning into the final stages of his. I know that he wouldn't want me to put my life on hold, but it's hard for me to find joy in things without thinking about him alone in a nursing home, and feeling a pang of guilt for being young and healthy.
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Welcome! It is very isolating to be the first one in your peer group dealing with all that comes with aging parents. It sounds like skilled nursing is your best and only option for dad, I'm glad he's there. As others mentioned the best things you can do for him are to keep up on how his health is and to be a visitor. Visitors get in person knowledge of how their loved one is doing AND become known and trusted by staff. Whatever schedule you can (and want to) handle is fine, anything will help.

Are you worried about your possibly bipolar or otherwise disordered mom, now that dad is out of the house? Unfortunately once you get one parent settled the other parent often starts to exhibit more problems.

Whatever questions you have I hope you feel welcome here, this place is an amazing resource.
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Reply to Slartibartfast
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ButterflySnail 20 hours ago
Thank you so much! I am definitely worried about her, but she is much younger than my father (they are 20 years apart) and my younger sister lives with her, so less so. Thankfully unlike my father, who really does not have any close living family, my mother has 3 sisters that I know I could call if I need help with her. That is one thing I'm grateful for.

I really appreciate the advice to visit. I am a teacher and with school starting I definitely need to rearrange some things to make sure I'm visiting regularly, but it's worth it to do so!
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Your husband has grandparents to help him understand if they’re still alive. You have to go on unannounced random visits to make sure he’s clean, fed, safe and comfortable. Is he getting physical therapy?
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ButterflySnail 20 hours ago
That's a very good point, one of the hardest things for me was seeing how many of these places have been reported for abuse or are just terribly reviewed. I am thankful that at least for short term rehab he is in a very nice facility that he really likes, and my mom has said the staff is very kind. I will definitely be making sure to pay close attention to make sure he is receiving adequate care.

Yes, he is receiving physical therapy and rehabilitation.
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My dad is in a facility as well. The fact that you made sure is taken care during his decline already speaks volumes. When I visit my dad, sometimes I take him his favorite snacks or something else that I know he would like. I know you said he has dementia but is still able to operate a cell phone? I think there are simpler cell phones that people with dementia can use. I asked because I also keep in touch my dad by calling him and he enjoys talking to friends on his phone. Sounds to me like you are already doing a great job. As someone already said, you visiting him when you are able will make the staff more attentive to him as well. Also, you really can not be responsible for his happiness. I say that because I once felt the same way and it will totally consume you. You do what you can do and that is all that you can do. Prayers to you and your dad.
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Reply to faithfulbeauty
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ButterflySnail 20 hours ago
He was able to operate a cell phone until his illness. It's kind of hard to tell sometimes what is from fatigue and what is the dementia at the moment, as he has just cognitively changed so much in a short time. My mom took his phone while he was at rehab the first time because he was calling her constantly confused as to where he was (which I don't agree with, but she is... herself). Maybe a simple phone would be a great idea. He gets agitated by things like news, scam texts and emails, so something less complex might be good. Thank you so much for your kindness.
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You could consider playing some music for him. My dad had dementia and was not very communicative. He loved opera and when I visited I'd stream operatic music from my phone. It helped because after I filled him in on what was happening with family, there wasn't much to discuss and the music helped fill the space and time.

I'd also bring my dad ice cream or jelly donuts, he loved those. A lot of times he'd ask for certain foods and I'd cook for him or get takeout.

The grounds of the nursing home where my dad was were really nice and in the nice weather I'd sit with him outside.

Looking at family photos is also a good way to spend time during visits.

It was very hard seeing my father in that environment. You see a lot of sad stuff in nursing homes and it affects you. It's hard. But know that it is important to visit both for him and for yourself.

I wish you all the best as you navigate this tough time in your young life.
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ButterflySnail 20 hours ago
I'm definitely nervous to visit him for that reason. The environment itself is... hard to deal with. I really appreciate the advice for what to actually do during visits, because that was something I struggled with at the hospital. I am so uncomfortable in complete silence so I just... talked and talked to fill the space. Music is an excellent idea. Thank you so much for all of the recommendations!
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C-diff is certainly complicating all of this now and nothing to take lightly. It’s kind of you to want to help dad. Accept that you cannot make him happy, with dementia and health issues, he’s unfortunately not in that place anymore. Don’t try to fix the unfixable. When you can visit, take photos to look through together, maybe of old family memories, or if he’s not able to make that connection, just nature or something. Take him treats you know he enjoys (this could be dropped off for him while you can’t visit) take him outdoors in a wheelchair, play music he likes. When the staff sees he’s a person who’s valued and cared for by you, they will care more as well. This doesn’t mean taking all your time. Your dad would always want you to build your life and be happy. I wish you both peace
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Reply to Daughterof1930
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ButterflySnail 20 hours ago
These are amazing recommendations, thank you so much. My dad has always had a sweet tooth, so I know that treats will never fail to cheer him up.

I think that's one of the hardest things about this, because I'm a "fixer". When something is wrong, I just want to make it better, but there is no better here. I really like your point about the staff caring when they see you care. This is all extremely new to me, but I do know that I've never wanted my loved ones to be alone in a place like this.
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The best advice I can give is just what you are doing...ask questions. Since he is in a skilled nursing facility, try to visit so he can see your face. Visiting will help, when you can. There isn't a recipe for the process. You are going through a rough time with lots of emotions. Give yourself some grace to feel all the feelings. Your dad is in a hard spot medically right now. Try to rest. This seems weird but all the emotion and anxiety is exhausting. I wish I could hug you. Hang in there.
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ButterflySnail 20 hours ago
I am definitely going to make sure I visit the minute they clear him. It really is so, so exhausting. Sometimes I just sit there and I feel nothing but tired and sad. Thank you so much for your kind words, hearing from others about my situation has really been like a hug for my soul.
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