I have been caring for dad ever since he was discharged from hospital back in December. He is no longer independent with his self care and has been totally dependent on me. I have come to realize he will not be same as before. He needs help with dress toilet and shower and it’s not hard on myself. What is hard for me is trying to control my anxiety of thinking what if he deteriorates and I no longer can care for him. I am depressed and feel sorry all the time that his days are only occupied by sleeping and eating. I feel so sad thinking about his state. I don’t know how to get rid of this feeling or be of more help. I just want him to have some qualify of life. I hope that he is ok with his state and not feel self pity. I am here 24/7 making sure all his needs are met and I don’t know what else to do to make him feel happier with life. I am constantly sad and worried.
It simply isn't a happy thing. We can't make it happy. We want to have some sort of magic wand and it doesn't exist.
Yes, it hurts. And I only wish I had a better answer othre than you are not alone.
Something has to change, or you will soon be suffering from effects of caring for someone 24/7. It sounds like you already are, so hopefully you are open to making some much needed changes.
I know many have posted about hiring some in home caregivers to come help you and give you a break, but I'm actually thinking more along the lines of looking for the appropriate facility to place him in where he can be around other people his own age and actually get to do more than just sleep and eat.
Most facilities have great activities that their folks can get involved in, so it would be a great opportunity for your dad to socialize and have more of a life.
Plus it would allow you to just get back to being his loving child and advocate and not his caregiver. It would be a win win for you both.
But in the meantime, please make sure that you're taking time away for yourself and doing things that you enjoy, even if it's just going to church on Sundays, lunch or supper with a friend, talking a walk around your neighborhood or just sitting outside on your patio. That will help keep your spirits up until you can make other arrangements for the care of your dad.
I wish you the very best.
It is not a "what if" he deteriorates but "how fast"
You can do a lot of things that can help you.
Hire caregivers. (Dad pays for them)
If he is eligible contact a couple of Hospice in your area ask for him to be evaluated.
With Hospice a Nurse will come 1 time a week to check on him and order medications. (medications will be delivered to you)
A CNA will come 2 or 3 times a week to give him a bath or shower and order supplies. you will get briefs,' gloves, barrier creams, and other supplies that you need. If / when you need equipment that will be ordered and delivered to you.
Your other option will be to look for Memory Care.
You are in a grieving process and it is normal to be sad, worried, angry and all the rest of the emotions that we have as humans.
And not to add more to your plate...if you have not consulted an Elder Care Attorney you might want to do that. make sure you have all the paperwork you need to legally make decisions for him. And the process if needed to apply for Medicaid.
If your dad is a Veteran contact the local Veterans Assistance Commission there may be benefits that your dad is entitled to.
When you get back, maintain some breaks, always according to the directives listed above. It is important that you don’t alienate friends or lose yourself.
Take a step back from caretaking. Hire someone to come in and provide relief with the most overwhelming tasks. If you can afford it, take one day off (or a period of several straight hours) per week from caretaking.
This time will not last forever. Learn to love all the sweetness of this time together as it is precious beyond compare. The days may seem endless, but as life turns out, these days are fleeting.
Appreciate who you are, for doing what you are doing. Most people do not have the compassion or love, patience or kindness to do this.
When I accepted my husband’s Alzheimer’s diagnosis there was instant relief. I’m with him 24/7 and while he is not yet in the latest stage, he still requires a lot of attention and care. By keeping my thoughts in the present and in happy times in the past, I get the chance to just enjoy the time we have today. I only move to the future when there is planning to do, but I don’t let my thoughts rest on how bad things might get down the road. I will deal with that when the time comes.
There is a really good book by Ekhart Tolle called “The Power of Now”. It’s life changing and has really helped me focus on the present. Almost all stress and depression resides in thoughts of the bad things from the past and thoughts of bad things in the future, neither of which we can change now. Stay present and stay happy.
Wishing you both love and peace.
you this way. This was a big help to me before by dad qualified for hospice. I was able to care for him at home up until his death. I did it for my husband who died from a brain tumor and for my mom who had lung cancer. It’s very hard to see them deteriorate but death is part of life and just making them as comfortable as you can is really the best you can do. You are doing a great service by trying to care for your dad as best you can. Try and reach out for as much support as you can get.
Therapy helped. Caregiver support groups help too but nothing completely takes away the anxiety or depression.
I compared my caregiver days to a stint in the military! I felt like I was at war with my mom which was tremendously difficult for me. I truly cared about my mom’s wellbeing but damn it was hard to do!
Wishing you peace in the midst of the grief that you are experiencing.
I don't like to sound rude or cruel, but I really don't wish for anyone to take on the burden of caring for a loved one like myself till they pass with no help . The psychological and physical anguish I went through still lingers even after they are gone. I wasn't able to pursue my career, live my life, get married and now I am 30. I feel like I have hit a dead end in my life and my parents till this day blame me for being stupid 🙃 to not get anywhere in my life when I had taken on their responsibility to care for their parents. I took care of my grandparents since I was 17. It's a long road of stress, heartache and despair. If you can't put up with it, and have the financial means then please don't.
My mom is on home hospice now and I still cry sometimes to see her so bedridden so suddenly and so weak. She's able to eat and drink somewhat but she's given up on getting up from bed. We don't have the money to put her in a facility and even if we had, she's from India and to see her not participating in bingo or other activites and hating American food would have killed me.
My kids are young adults and our lives are on hold because we don't go on vacation now (traveling is one activity we all love) or have any spontaneous fun. So I try to be cheerful for my family's sake. If I'm sad and crying, they get upset too and the house becomes so gloomy. A few times I yelled at my husband & in laws (they live with me too but they are in good health). I was so horrified to take out my frustrations on them.
I also discovered it was mentally exhausting & physically impossible to be doing mom's toileting, feeding by myself. So I have aides coming in for a few hours now. Mom sleeps most of the time and I get out. When relatives comment how fast mom has declined, I again plunge into despair. But I know I have tried all I can to get mom up & moving. I sit next to her, play her favorite songs, feed her snacks, brush her hair and get satisfaction that she's getting excellent care at home.
Please make time for your self so that you are there for him in a happy state of mind and not so sad and worried. If you are cheerful, conversations will be so much better and the mood in the house changes so much.
If you can place her, then you can visit her without being her care taker. You can take her for walks. Or, maybe, borrow a friend's dog who can visit Mom too.
Change is a good thang!!!!!!!!!!!!!!