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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.

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Not to stress you more but..
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.
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RedVanAnnie Mar 2023
As always, G1954, you have summarized it well.
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Just be there and do what you can for him. Is he bedridden? If not, take a drive together, go to the park. What does he enjoy doing? I hope you're able to find some joy for yourself and your dad. [Hugs]
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I agree with grandma1954, we start grieving long before a death occurs. When someone has one foot in this life and one foot in limbo or approaching death’s door, they are no longer the same person as they were before.

Looking at your profile tells me that your dad is not going to improve. Of course, watching your dad deteriorate is sad. It’s terribly painful to watch people slowly slipping away.

Is it possible to get away for awhile? Even for a couple of hours or so will help.

Have you considered speaking to a therapist about your feelings? Or joining an ‘in person’ support group? I did both when I was caring for my parents.
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Grandma's response is so perfect. I couldn't add to it other than to say--when was life all happy and perfect? Was it ever? I think the worst of the diagnosis of our elders is that it has a sort of hopelessness that other things don't have. The path is inexorably downward, and the end is death. We are often seeing a person on whom we depended, and we are seeing them reduced and facing down loss upon loss upon loss, until the loss of mind, then life.
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.
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You say that you want your dad to have some quality of life, but what about you? You deserve some quality of life as well, and it sounds like caring for your dad is taking a toll on you. It's tough to be be someone's one and only and it sounds like that's what you are to your dad.
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.
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I have taken care of both my grandparents till they passed. My grandma had CHF and my grandpa Alzheimers. If you think it might be too hard for you in the long run, then I suggest you as others have stated place your father into a home.
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.
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WearyJean Mar 2023
Dear Saiyuri, you are only 30 - way too young to give up on your dreams. Start with a good counselor, keep a journal, list steps that you can take each day that will bring you closer to your goals, and ask God and others for help. You can do this - step by step and day by day. Come back to the forum and let us know how you are doing. May God bless you and wrap His arms of love around you!
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Hugs to you and I know exactly how you feel. Please take comfort in the fact that you are not alone and you are doing everything in your power to care for him.

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.
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Soldier4Christ Mar 2023
There is a wonderful book called Hope for the Caregiver by Peter Rosenberg there is quote he says " We didn't cause what our loved ones our going through we can't fix them their going to fall their going to bleed their going to die." You want to be able to stand at your loved ones grave with open hands not clenched fist. A healthy Caregiver makes a better Caregiver. I hope helps little your not alone...
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So sorry about your dad. Acceptance is the answer. When you truly accept in your heart what is happening, the anxiety will clear some. When we worry about things we can’t change, it creates stress. Accept that your father’s life is what it is and try to focus on each moment of each day. If he’s sleeping, sit with him and be grateful for that opportunity in that moment. When your mind starts to stress on the future, try to redirect your thoughts to the present or think of happy times in the past.

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.

Best
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ACaringDaughter Mar 2023
What a beautiful response!

Wishing you both love and peace.
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Get your father into a facility real quickly. You need to seek professional help for your anxiety. May be a social worker with LCSW license.

I share some feelings you have with anxiety. When my mother was still living with me back in 2012 to 13, I was constantly scared what would happen with us and her mental decline as time went on. After several falls at our condo, even with my assistance, paying her bills, driving her everyplace, plus much more, she was forced into a facility and had an ombudsman assigned to talk with her.

Once my mother was placed to age in place near my brother who lives up in OR, I got professional help with an LCSW to deal with my disability and anxiety since I was so angry with my mentally ill mother and other dysfunctional family. I spent once a month getting counseling for over 5 years with my problems and working a job until my LCSW retired. I was working then but 2 years and 5 months short of retiring goal but did fine, long after my mother was gone.
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My coping methods so far: drinking, smoking pot, eating, and sneaking out for a walk in the morning before she wakes up. Even when I've accepted reality, it's still a gut punch every time I see her waddling around in diapers and trying to put on her pants over her shoes.
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ConnieCaretaker Mar 2023
Maybe it's time to consider alternatives for both of you. Respite care for mom and grief therapy for you.............letting go of bad habits can bring joy and good health to you. Join a fitness club and challenge yourself

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!!!!!!!!!!!!!!
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Hire someone to stay and provide care for a weekend. Take a quick trip with a friend and clear your head. Do not talk about hospitals, adult briefs, showering a parent or medications. Talk about current events, your friend’s problems and successes, etc. Go somewhere where you can talk about what you are seeing and doing. (I did this and it helped me tremendously).

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.
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ThomasY Mar 2023
This is very helpful for me. Thank you.
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You are 'pre-grieving' the loss of your dad, how he was, that he will pass away, as we all do. You also sound like a good candidate for 'respite', where you get a chance to step away a bit and restore your resilience and balance your emotions. Your obvious deep love for your dad shines thru your sadness; your dad already HAS 'quality of life' appropriate to this stage of his life. That may be hard to see, accept, so perhaps a social worker, geriatric specialist, or hospice professional could explain what are reasonable expectations for your dad so you can adjust to this better for both of you. Keep in mind your depression/sadness is understandable, but you don't want it to color your time with your dad. Get help for yourself so you can be happy with your dad 'as is' and better cope when his conditions changes.
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When I cared for my dad who had dementia, I found I needed a break and so I was able to get respite care. He actually qualified through a state program for about 4 hours a week paid care, and then we paid another person out of pocket for other days. The state agency (Seniors with disabilities) also paid for a certain amount of counseling for me as his caregiver as well as education about caregiving. You might want to see if there are local programs that can help
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.
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I think you need to come to terms with the fact that he is dying in tiny bits and pieces and this will go on indefinitely. What you describe is exactly what my dad is doing right now. My dad is in a SNF because I cannot handle taking care of him and my mother too.

You need to get caregiving help in for him or place him in a SNF so that you are not locked into this situation 24/7.

It sounds like this situation is affecting you profoundly, try to get some professional counseling for yourself.

Take comfort knowing you are not the only one out there walking this walk and dealing with this incredible anxiety. It’s the worst ordeal I will ever experience.
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You need to contact a social worker who can guide you to what is available as far as in home help, and other programs. The social worker can also help you formulate a plan for the future as changes occur. Having services to help, or fall back on can take some of the stress off of you. You might consider a therapist to help yourself with these changes to your life and please remember you are not responsible for his happiness, all you can do is be supportive and caring but you need to practice self care also.
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Dearest Carelotsss,
What you’re feeling is the beginning of bereavement. It’s natural and some days will be better than others. Try to stay upbeat for your dad because he is having the same feelings too.

It might help to see a therapist who specializes in bereavement and can help prepare you for the inevitable. Keep in mind that 93 is a long life and be happy that you have this time together.
Love and light,
Sabrina
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If you can get an aid to come in a few hours a day. Your date might like seeing a different face. He can tell her all about his life, etc. during this time you can take a break. Go for a walk, to the gym, to the movies, out to lunch, etc.
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Happiness is not a goal for dementia patients, rather safety and a state of calm are successes. Dad is in need of professional assisted living and you would benefit greatly from employing a grief therapist who can walk you through the 5 Stages of Grief (Kubler-Ross) and the acceptance of letting go.

Giving up your life and happiness is not a requirement for loving and caring for a parent.....................time to get help for both of you.
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Alwaysdobetter5 Mar 2023
Safety and calm are highly important, but my attempts to give my wife some happy moments has paid off. She smiles and comments on videos of our grandchildren on Photoshop and when talking with our sons, despite not remembering their names or what she just ate. When she is happy, I am too. If one can give a dementia patient some happiness, it lifts their depression and their caregiver's attitude, speaking from my experiences. My wife was in an SNF room with a dementia patient years ago. She told us, "I can't remember s _ _ _" , then offered us candy. She was happy as a lark throughout our stay.
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tell your dr. this and he can prescribe something. a light antidepressant and ask him what if you get to the point of where you need help.
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It’s totally impossible not to get depressed in these situations. I wish that I had a good answer for you. I had depression when I was a full time caregiver for my mom.

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.
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Find an in-person or online caregiver support group. See a therapist if the depression is overwhelming.

Get IN HOME help once in a while, take breaks, cultivate friends and hobbies outside the home, go for walks. Any little distraction helps.

And realize you are not responsible for ANYONE'S happiness except your own.
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It's hard to be a care giver, mentally and physically. I took care of my husband for five years in late-stage Parkinson's disease. He passed away nine months ago and I still cry when I think about how he suffered.

The only thing I can offer is take it one day at a time, and find help so you can get out once in a while. Exercise helped me too.
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I cared for my husband at home for the last ten years of his life. He had vascular dementia. The local Area Agency on Aging got him involved with adult day care that they subsidized. They provided a caregiver support group for me that met every other week. They sponsored some outings as well. They also found me a longer term respite so I could visit my aging mom a state away. Contact yours! I think every county has one.
As long as my husband was mobile we would go on 'field trips' to see the tulips blooming or the coast guard practice in the bay. We'd get burgers and take them to a park. Watch the swan migration. Just getting out of the house is immensely helpful.
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The only way not to be depressed as a caregiver is not to be a caregiver.
You are sacrificing your life for your father that has had a full life. You
need to change your situation. Therapy will only help keep you in a situation
that is not healthy for you. If you get out of this care giving situation your
depression will be lifted. You need to deal with the quilt of not making him
happy. You should consider a nursing home or full time help. It is
normal to be depressed being around a sick person all day long or a demented
person. Work on getting free. Life is very short. My life partner of 28
years is in beginning sages of dementia. Fortunately, I am able to separate fom him because we have an apartment and a vacation home. I now only see
him 6 days a month. I was losing my hair, getting an ulcer and getting
depressed which I never was my entire life! Try and get free. Having this
option really helps plus Long Term Care Insurance. Very, very important!!!!
Good luck.
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If your dad can be left for short periods of time, set up a camera and take short breaks from the house. Bring in outside help to give you some time off. We had an agency near us that offered 24 hr care at a 14hr day rate. This works if the loved on needs minimal help during a 8 hr stretch at night.
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Carelotsss: I am so sorry for the pre-grieving that you are experiencing. Perhaps you could be aided by a therapist.
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Have you talked to your Dad about what what he would would like to do if his care is too much for you to handle? Have your talked to your Dad what he would like to have happen if you were not there to help him?

I think some of the anxiety is due to the fact that you don't really know what your Dad wants to do with the rest of his life or how he would like to be cared for.

You should talk to your Dad about how he views the future and where he sees your role in this. It is possible that he wants to go into managed care, but doesn't know how to tell you without hurting your feelings.
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Read up on anticipatory grief. Feeling down comes with this job. Even when your parent lives in a facility. I have great days then very sad days watching and filling the needs of the woman who is no longer my mom. I see her body but who she was has left her. As for me…4 years into this and I am mentally tired. I chose counseling. I go twice a month to let the feelings out with someone who does not judge me. Friends will get tired of hearing our problems esp. at my age {72}. All people have issues of their own to face. My insurance pays all but a small co-pay for my sessions. My cost monthly is about that of 8 Starbuck coffees. Well worth it! Good Luck. PS: church also helps greatly..we are never alone.
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First, thank you for taking care of your dad. You are incredible for taking on this very emotional task. I found breaking up the week by hiring a nurse to check on my 91 year old mom's diabetic roller coaster issues including extreme neuropathy with her feet. The nurse recommended that I get a script from mom's doctor for in-home care through Medicare. We had a physical therapist, a nurse, and dietician come once a week for a month. It helped break things up and I was able to get support in the process and Medicare covered it. Mom was thrilled to have the company and attention. I just asked her about your situation. She's about to turn 92 and empathizes with both you and me on this road (she's still quite sharp, just physically failing). She recommended a support animal if possible. We have a pup that truly helps calm frayed nerves and sadness. Wishing you continued support!
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Hello! Is so nice you are actually available and able to care for your dad. I can only advise you to just enjoy the time you have together. Sure he sleeps a lot (so does my 91 year old husband) but when he’s awake we talk about our REMEMBER WHEN days. At times, of course, he doesn’t remember, but when he does it a lovely conversation!
I put flowers on our table where we eat and IF he’s able I like to take him out to lunch once in a while. Just a few things to brighten his day! It will get challenging as time progresses, so remember to take good care of yourself too.
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