Does anyone have any suggestions bc his depression is high ,he's severely anemic and he stopped paxil bc it made him more tired . He received a blood transfusion today and also has a bed sore healing but I can't find a way to get pillows to lift off bed sore .Mets in spine plus arthritis in l4l5s1 and so far no certain pillow or peanut balls I know of help him to lay out of pain and off the bed sore and nerves . Bed sore is healing but are there any wedges etc that could help bc the doughnuts do not ? Any personal experience to add bits of joy but medically to get the spine off of the bed sore. Do wedges help and if so please name brands or links bc I feel desperate every day I can't help . Any suggestions other than drinking boost and watching TV and going to apts bc dad is a very social person but has no energy to even have many visitors . My goal is comfort and a lil joy. He's fighting for every minute and hour and the look of despair and agitation replaced his loquacious beautiful self and smile . How do you cope or what can I do to make his days easier ? We are putting a freezer in room for ice and got a temporary recliner but if anyone has a recliner they really love please give me names or links Any meditations that help anyone perhaps bc I'm trying to get him to meditate a few times a week but am having trouble finding really good ones less than twenty minutes . any way to get pressure off sacrum and lumbar ? The joy is gone from his eyes even when I know he's a tiny bit comforted and his fear and pain come through as agitation. I'm the daughter that had always had medical and depression issues and who spills things etc and I feel I'm hurting more than helping bc of how snappy he gets with me though I know it's not personal . I am in counseling trying to navigate this but have no group and I I truly would feel one ounce happier if I could figure out anything to bring him more comfort and to see the light sparkle in his eyes . Any quality of life suggestions ? Sorry for so many questions lately.
Sacrum bed sore ,types of pillows or... - Advanced Prostate...
Sacrum bed sore ,types of pillows or wedges to get pressure off sacrum and lumbar ? Meditation?how to improve Quality of life bedridden?
hello! I’m so sorry to hear about your dad and his suffering.
When my dad was in palliative care, someone on this site suggested medical sheep skin throw to relieve pressure on the back. I currently use it for myself now.
Is your dad currently on steroids? I found dexamethasone gave my dad more energy.
As for things to do, have him tell stories. We had my dad talking about all the things he accomplished in life. I would ask certain questions to help start these conversations. I think it gave him back some pride and a boost of confidence.
He stopped the steroid bc he didn't feel it helped . I will look for a sheepskin throw is that to avoid bedsores? Tysm for your kindness . Healing light sent to you as well. My dad doesn't seem to want to speak much bc his energy is low and pain high but that is a wonderful idea if he gets more energy post transfusion and iron infusions . Ty so dearly xo
yes , a alternating pressure pad on the bed would help with bed sores and body pressure points . They come in different types and thicknesses. Thicker more than thinner for him. Get best advice from medical supplier. They work wonders for most users.
I’d would recommend revisiting the Paxil with his doctor for a different medication.. there are many new ones.
❤️❤️❤️
I am also confined due to a spinal injury. I use a lift chair that I like by Golden.
Mel
Thanks Mel . You are always so kind and bring a smile and my dad is so sad . I admire your perseverance and smile and how you are so unique and do not define yourself by the situation at hand .
I'm sorry for your suffering and feel blessed to know you Erica 💓
Ty Mel yive always read your posts and admired your replies etc . I wish I could heal you too,but I'm glad you have found something that helps. Xoxo
You are a wonderful daughter. He is so lucky to have you.
Tysm it's nice to hear bc I just don't feel good enough rt now. Ty for these kind words. Sorry about the typo. I often use voice and it writes something else lol
When my father-in-law was in hospice we got him singing (he used to sing in a family band) and recorded it. That inspired us to ask him to tell us stories from his life. Many of these we had heard numerous times, and he initially wasn't interested, but when we started recording them for the family, he perked up. He really seemed to thrive while he was telling his stories, and now the family has his recordings. I have now started telling my stories to my family while one of them records. It often ends up being a great time, with a lot of, "do you remember the time when we all...?)
Just remember, he is getting to a point where all you can do is be there for him, and show him love. As a father, I am confident that he loves you and appreciates you for all you are doing.
Ty for these words I just wish I could do more . I feel like bc I currently have no joy in my heart and am in therapy and unde med dx for autoimmune,I have so little to give and it's hurting like hell to feel he won't see me well or that I have nothing to give or just make things worse . I used to be his smile and now I feel he's forgotten me but he has not stall .his affect is simply blank and more lifeless that ever and I know to tell myself it's not me but I'm hurting by not being able to help.
Any advice on getting pressure off sacral bedsore do he can lay on back . We ordered some wedges but are there any others recommend who have dealt with this .
Love light and healing to all,
Erica
Erica,
My heart goes out to you so much. That feeling of not having any joy happens when you are caregiving because you give so much of your life to other person. Its natural, many of us here have felt it too. Hang in there <3 You are doing the most wonderful thing for your Dad by being there with him and supporting him - what you are doing is enough, even though it doesn't feel like it. It never does feel like enough. I felt the same when my Dad was very ill. The hospice worker reminded us that people often have internal work they need to do as they get close to passing, things they need to settle and work with within themselves as they prepare for transition. I think this may be what is is happening with your Dad when you feel like he is blank and shut down from you - he isn't. It's only that he was work to do. Keep on loving him, just as you have been, and being there with and for him. He is aware of your support, even if he seems far away. And it does make a difference! Sending you so much love and HUGS!!!!!❤️❤️❤️
In solidarity,
Sunlight
Ty I love that sunlight I your screen name and you did bring a bit of sun. Problem is his wife is abusive and neglectful and immthere a day and fall apart three more bc I'm finding this too traumatic . I want to be his primary caregiver . I want a home and him in it. I want custody of my father as he is fighting alone..she is not up there with him .she instead built herself a beautiful bedroom downstairs . It's truly making me sick bc I don't want to get authoriyies involved bc that's far too traumatic for him and I've been begging him can we just live together in a condo ..and I'm truly upset bc of my own illness he feels I can't care for him ut I can utilize my med and I'd have purpose and he'd have his daughters but we have a huge issue on her hands bc she's basically telling him it's unfair for him to fight for life bc she wants to go be with her family meaning die bc I don't feel like staying here for you. So now he canceled treatment saying I can't do this it's not fair to her. Sorry to air dirty laundry but this is how deep the pain how severe the issue .I have asked to move in and he said no . Her never sat no . He doesn't want me to see what is happening. I'm beyond devastated I'm beyond words but your comraderie and your soul ☺️ my god are you a beautiful human being . Ty for being you .pm me if ever you wish
Erica,
That is an incredibly difficult situation. I'm so sorry for you and your Dad. Thank you for sharing it all - sometimes I think just knowing someone is listening helps <3. When people are ill, their world often gets quite small, by necessity. That is hard, but it also means that seemingly small gestures can mean a lot. I'm sure you are spending as much time with your Dad as you can - keep doing that. It does make a difference having someone who loves you near. If there are things he always enjoyed, see if you can find ways to bring them to him. For instance, my Dad enjoyed reading immensely, but it became difficult for him, so I began reading to him. He also loved the outdoors, but he eventually couldn't go outside, so I would bring him "bouquets" of different plants, pine branches, etc's that brought the outdoors to him and it made him happier.
I'm sure you are devastated and angered by his wife's neglect.If you hold in your mind the idea that some people just can't deal with others' illnesses, it may help you a little. I have known spouses like that and others on this site have mentioned it as well. As awful as her behavior makes you feel, try not to focus energy on it or put effort into changing it. In the big picture, her behavior is what it is, and your Dad is who is important. What I am about to say is very, very hard: the more you can minimize conflicts when you are with your Dad, the better it will be for him. The stress of those interactions is often just too much when someone is sick.
Do I correctly remember reading that your sister is helping with caregiving? Are you and she able to make choices amicably about what to do for him?
Lastly, keep telling your Dad you love him, in whatever way he understands best - maybe it is saying it, maybe it is bringing him a favorite food, or making sure he always has clean towels 😀 (I'm half-joking, but all I mean is try to make sure whatever is important to him happens, to the best of your ability). The absolute most important thing in all of this is that your Dad knows you love him. If you are confident of that, it will be always be a comfort to you.
I put this all in your thread in case it might help others. If you would like to reach out by PM, that's fine by me as well. HUGSSSSSSSSS! What you are doing is hard -some of the hardest things we face in life. You're doing a great job a navigating a tough situation. Hang in there ❤️❤️❤️
-Sun
Ty sun. Your words are wise and beautiful ❤️
I'm very sorry to hear that it sounds like he is mostly confined to bed. It's really compassionate of you to say the least to be by his side.
Hospitals use alternating pressure pads. Here are some examples. They hopefully keep pressure from being on one area for too long. When in a hospital it is a written order/procedure for the orderly or nurse to come into the room a specified number of times per 24 hours and physically change the patients position in bed to attempt to reduce bed sores along with the alternating pressure pad.
amazon.com/s?k=air+pressure...
Tysm❤️
My heart goes out to both you and your father.
My suggestion is for you to call his oncologist (or palliative care doc, if he has one) to thoroughly discuss what you have said here. Many oncology practices have a social worker on staff ( or can recommend one), and I think it might be helpful if you could speak to such a person to help you sort out your options in this difficult situation.
Also, it sounds like your father is close to qualifying for a hospice arrangement (if he doesn't already) , and a social worker could help you sort through the various options that would be appropriate in your specific situation.
Finally, I am not a religious person, but if there is a heaven, there must be a special place for people like you.......................
Those are the most beautiful words anyone has ever said to me . It says a lot about the soul and the empathy ,the spirit ,and the power of the man behind the words. Ty for being you .
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