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My mother is in hospice care but seems like she is no where close to really dying. I took a leave of absence to take care of her thinking that she was going to live a short amount of time. That was 5 months ago. Five months of no income. She deteriorates to the point where I think there is no return, but then she bounces right back like a rubber ball. She has had several rebounds and they are killing me. I feel like I am on a roller coaster that will never end. I love my mom but I am SO ready for her to die, just so I can have my life back. I feel like there is no end in sight. How can I retrain my thoughts to be positive instead of feeling like I'm in total despair?

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I feel for you. Mine got a lot healthier when she moved in, not what I was expecting. Now i get the prospect of spending the rest of my life with someone I really don't like. My poor husband, he had no idea what she was like, but wanted to do the right thing. The right thing would have been assisted living. Now we have no life, no fun. No impulse trips, we have to watch every penny. Really is horrible. I don't know how to feel positive, I stay at work as long as I can just to avoid going home.
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KatD81 Mar 2020
This doesn't sound like a pleasant long term solution for you!
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My mom was on Hospice for 16 days and when I placed her on Hospice I was told she most likely would pass in about 3 days, that didn’t happen and I watched her deteriorate slowly. I now see the Hospice staff grievance counselor and they have been wonderful, I’m sure you can utilize their services.
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I went through almost 9 years of ups and downs, the last two really taxing with my bedridden mom. Then I had a one year break where I barely got my footing back before SIL living with MIL died and my husband now the only offspring thrown right back into caregiving for MIL, 89. for the last 3 years. That makes round two up and down limbo. They deteriorate, you brace for the worst, then they rally. On it goes and the roller coaster is stressful and taxing. I watch others go through parent care and after they are gone they go on to fulfill dreams and make plans, enjoy their retirement, and they sure let me know how great life is for them.
I was so burnt out during my mom's care I couldn't even fathom doing much else. A neighboring city may have well been on the moon. I would look out windows and see planes fly and feel imprisoned. I never let the parent know how bad I truly feel. Now, I am at least researching other cities and places, , places we may want to go someday if we are not too old by then. Some days I am hopeful, some days I am really depressed, I get through this by learning about places and watching sports, doing little things and grabbing any moment for myself if and when I can, even if it is just a good cup of coffee or tea. Compartmentalize...one day at a time and keep believing there is a door at the back of this dark room and one day it will open and our parent will find peace from the rough times of decline.
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Read up on anticipatory grief... our elderly parents are dying a slow death in front of us. It is depressing in its self!
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My advice is to go back to work & let God take care of the dying part. I discharged my mother with dementia from SNF when she turned 90 yo ..she was in SNF 10 months....thinking it probably would be maybe a year at most since the bones by her neck was showing & she was picking up every germ in SNF. That was 3 years ago next month. I evidently got her stronger because she’s eating better at home.... Hugs 🤗
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I saw a psychiatrist.
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Llamalover47 Apr 2020
My psychiatrist changed. She was rather pushy last time I saw her. Probably not needed anymore anyway.
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I would add to stay away from extremely negative people. They will make the depression worse. I can’t stand Pollyanna types either. Find people who are balanced.
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vickic Mar 2020
I loved taking care of my Mother she was the world to me now that she passed I am lost enjoy your Momma.
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Lots of good advice here.

In the mean time, while the dust settles, I have a few suggestions for you.

Enjoy the present. Look out the window and watch the birds or people walking by. Do you have some music that takes you away? I have a few songs that take me back to good times. I discovered that crocheting helps me. Learned on you tube.

Watch funny you tube videos.

Call someone or maybe an old friend to talk. Not complain.
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vickic Mar 2020
I agree thank the Lord for blessed times.
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I’m so sorry you are struggling with depression and anxiety. Being out of work for months on end is terribly frustrating. Preparing for the worst, then to have false hope prolonging the agony is a nightmare. This isn’t being heartless. It’s being totally honest.

I hope that you can resume your life soon. Yes, you will grieve. Yes, in time you will heal. Yes, you need to have normalcy in your life again. Please do not feel guilty about this or allow anyone else to place guilt on you.

Even if they feel differently they shouldn’t tell you about it, for what purpose? You absolutely don’t need guilt placed on you. You are going through enough.
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I know your pain, I'm in the same situation but not on hospice. I am the ONLY child caregiver. Dementia, stroke.. immobile and full 24/7 care and strict commode schedule. It is now 2 years on-going at home. I'll spare you the details because the answers on here resound everything I've been going through. I have a fulltime job, kid to take care of and doing this. The days are beautiful but I can't partake in it. I have lost friends but I don't want to socialize - and they don't want to come over to see mortality for what it is. High anxiety day and night. How I cope... I take walks before the day ends, I take Epsom salt (magnesium) bath as the magnesium transdermally helps with anxiety and calms, I also drink this stress releiving tea that contains Ashwandga. This together works overnight to the next day, and I have a burst of good feelings so that I can focus on life. Suntheanine and GABA supplements 2x a week gives a boost of good feeling. I do tend to go out when I can, even for a drive or to Starbucks, can't imagine how restorative that is, just to see, smell and feel fresh air! To see life go on so carefree as my life stands still....
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ACaringDaughter Apr 2020
You will see someday that you didn’t lose your true friends.

Difficult times are like a truth serum. We get to (unfortunately) see people for who they are. All those “Good Time Charleys” are not worth your time.

I truly believe that the goodness and kindness you are showing by taking care of your parent will pay off a thousandfold.

Karma is real and you will find great happiness when you are a great person who does the right thing.
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Maybe she is rebounding to have more time with you — but as is life, the feeling isn’t mutual.

I think most people in the world feel like you. You have made the sacrifice you alotted to make and you’re done.

Ask another family member to step into the caregiving role and head back to work. If you can’t find one, hire someone. According to what you’ve written that seems to be the balance that will make you the happiest. I’m not diminishing the lost income. I too cared for my family. You must have a really unbelievable job and coworkers that are worth leaving your mom for.

How I wish I could trade places with you and just have one more minute together with my parent.
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I think sometimes we feel like we have to carry all of the weight of caregiving alone. Even with your husband and an aid, this task is large. When your mom was raising you, she probably asked doctors, teachers, friends, strangers, church members, neighbors, relatives - even long distance ones- for advice or help. She probably had to walk away from time to time because she felt overwhelmed and didn’t know what to do. I know my mom did. I know I did when my kids were little and even more now that they are teens. I do the same thing with my father in law. I also feel guilty. Like maybe I should be doing this or I’m not doing that well enough. But I’m doing the best I can. When I know better for sure, then I can do better. But for now, I’m trying to allow myself some grace one day at a time. Also, I go to counseling once a week. It has helped tremendously. I believe there are online options in some places if you are unable to physically leave. Cognitive behavioral therapy (CBT) helps you change you replace negative thoughts with positive ones. There are also apps if you have a smart phone. I needed an actual person though. Hugs.
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I feel you anguish and have similar feelings. I do feel resentful and wonder when it will end. Then i feel guilty and feel like a bad Christian. Here is how I am combating the depressive feelings.
1. We basically had to force her to sign on with a CDPAP, so that I could get paid a small sum to enable me to hire help so I could get a break once a week. ( she said I shouldn't get paid to care for my own mother). She is bedridden and can't be left alone. This also affects my husband since we both gave up the life we had and feel chained to the house. Now we go out for 6 hours every Wed. And the aid also does 1 of her showers on Monday.
2. My husband starts dinner while I walk on the treadmill for 30 min. A day.
3. A friend is trying to come on tue. So I can go to bible study.
Keep your chin up and try to build some breaks into your day.
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MaryBee Feb 2020
So glad you have taken some positive steps to deal with the challenges of caregiving! They are really good suggestions. It’s necessary to do what we can during this journey, and to lift each other up and support one another.
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You gave up your life for mom's. Start regaining balance. If you can, want, and need to work - do so. If mom needs round the clock care, get help from family, friends, church, and/or paid help. Start going out again to socialize with family and friends. Bring mom on outings when you can or ask people to come over for meals.

Depression and loneliness are cousins. Loneliness is treated by getting together with others - especially where you can feel useful. Depression is darker and a little harder to treat. Treating depression takes many forms with varying degrees of success - medications, light therapy, exercise, cognitive behavioral therapy. Start with treating yourself for loneliness and if that doesn't help... see your doctor.
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You have to plan for yourself. It can literally takes years to recover from caregiving.
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My mom's Alzheimer's lasted about 15 years; the last five were severe she needed 24/7 care. At the very end it was extremely difficult in terms of care. I went through a lot of depression, but when she died it was as though my whole world died along with her. After her death I am going through profound grief but I try to keep on living the best I can. Mom died age 90 practically brain dead from the disease, kept alive with a feeding tube and strict bowel schedule. I had to use a hoyer lift to get her to the living room daily. She did better on the chair. Ironically Alzheimer's did not kill her. She had liver tumors and went through liver failure which symptoms only lasted one week, and she did not suffer at all. SO even if she did not have Alzheimer's the result would have been the *same*. I'm still grieving a lot and she died 4 months ago. Mom was on hospice for two years. When you love someone it is painful. That's just how life is. People die; we only dance on this earth for a short while. Life is painful only for the living.

Age 90 seems like a long time, but it really isn't. I see people's folks even live to 100. I suppose no matter how long they live it's never enough time. As centuries will pass after we die, goes into thousands and millions of years...even 100 years is a very short time to be alive.

At age 60, mom died. Now--somehow--I have to pick up the pieces and forge my own life. Caregiving does a number to your head when you center your entire life on an old, confused, fragile person sacrificing your life for them.
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I’ve been my Mothers full time caregiver for 20 years come this April 1st. I moved her in my home two decades ago while I still had 6 kids to raise. I’m not going to lie and say it’s been easy because it hasn’t. However Mom didn’t want to get old or sick. We all will experience unforeseen circumstances at some point. We all will need loving care as we age. What then is the solution for our elderly? We are their blood family. Our parents took care of us. Five months to me seems a very short time. Yes I get depressed. But what is the alternative? I refuse to make my Mother feel unwanted. It’s rough enough on her to be in her condition. It is a sobering thought that our loved ones will feel resentful and abandon us at our weakest moment. But that is the reality most of us will face one day. People want to do their own thing not be burdened by anything unpleasant. This attitude does come back to bite however as we all grow old and die. As a teen I worked in a nursing home. It was shocking to me to see so many elderly who had no visitors. Left to die as if they’d never been young and vibrant. Been mothers and fathers. Worked hard in their lives. Yet there they were alone. Dogs get treated better. They are surrounded by their owner while they are euthanized and comfortable slip away in death.
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I love my Mom and am grateful for every moment I get to honor her and keep her, but hear me. My beautiful Mom was hit hy a car 3 yrs ago walkimg into a local grocery to get ingredients to make a pie for a neighbor. She suffered head trauma and it accelerated the dementia we did not know was forth coming until doctors said she had onset verrry early stages that would have taken yrssss to get where it is now, but due to the accident and head trauma it could advance. It did. Then my Dad cared for her 2 yrs during which time i had just retired...so i went back and forth from my home to theirs 4 hrs away every 6 to 8 wks. Mom was indep and could do a lot, still. Then I noticed my Dad getting tired...realll tired...so i moved back and in the one year I have been back home in my hometown and living with them...my sweet momma has had 2 major strokes...One major stroke and one massive stroke. She had totally recovered and 9 mths later had a massive stroke...Icu 11 days.
Rehab 14.. As my Dad and i were leaving day 14 to get mom home ...my dad had sudden numbness as we were leaving and i called 911. He was in icu 5 days. I got mom home and my sister came. A neighbor helped me get her home and her husband went with my dad. My sister came snd stayed 14 days. We had to learn to use the peg...which is tube to care for mom...Dad learned a virus must have attacked his heart 10 to 15 yrs ago without him knowing and all these yrs...only a third of his heart has been alive. That virus killed all but a third of his heart and he never had one symptom or weakness for all these yrs until a gentle warning sign recently. They put a defib vest on him and he has worn it 60 days. He is a sweet man and helps me a lot...He has a defib implanted in two weeks. Dad is amazing. How can it be?? He played avid golf for yrs...GOD IS GOOD. I spent 4 days in a row last week bathing mom multiple times daily due to diarhea from meds. It got difficult...because it got everrrywhere.....Day 4...i burst into tears. Mom looked up and said..."I will pray for you." That melted my heart. She was the verrry best mom ever. She took good care of me when i had rheumatic fever at 7 yrs. I had a moment of grief and i stood there looking at my sweet mom and the poop and my sweet daddy with his heart monitor and i realized i was grieving for them and for me. I said..."Lord...thank u for my precious parents." I wiped my tears...hugged them and realized i needed to get out and start exercising again...but u get so drained and talk yourself out of it. I do get out some and eat out...but i find nothing works better than walking 20 min a day...outside and at the gym. I keep it simple. I also realized this is just one small season of my moms life...Mom has to have assistance walking and eating. I journal often...walk daily and take drives...I find peace in just keeping life simple and quiet within right now. I pray a lot and pray for others...in my prayer journal. I.paint and draw...because i started a new hobby in doing so. The sweetest part of our day is when we tuck mom in each night. Dad kneels and prays on one side of her bed and I kneel and pray on the other. Then mom prays. It is a beaautiful time and sight. Dont leave God out of your sorrow. Rather than me feeling my life has been taken from me...i see my present season as a new calling. A teacher for 31 yrs and youth leader in ministry 2 yrs...after retirement and now, at 55 yrs..care giver for my precious folks in thrir season of greatest need and love. I fight depression and grief...myself...i miss my life!!! But...i see it as a season of quiet trust and soul.searching and service. I have monents i feel despair...and my sister named those "sinking spells" and we will tell each other we are having a sinking spell and step away a few hrs and renew. I keep a gratitude jourmal as well...which may be a drawing or news clippng some days. My sister is 4 hrs away. I am here by myself. She cones asneeded
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Harpcat Feb 2020
Although the first part of your post made me wonder how this would help the OP, I got to the end and really liked what you wrote. It was insightful and a different way to look at a situation such as yours. May God's mercy be yours.
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Your depression seems appropriate..situational. I thank you for your blunt statement..your words echoed my very thoughts! “When do I get my life back”..... 18 months of it’s all about mom...barely any time that I am not actively worrying or doing for her. I gave up almost all the activities I love. I too feel the mild depression. My mom one day is great...next day looks like we are at the end. Somedays I think she will outlive me! And I am 68. She is 86 and she nearly died in December. I pray ...never ending prayers for the strength to serve her...and to do it joyfully!
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GratefulUriel Feb 2020
I am in a similar situation. Bless you and all of us who are in these circumstances. May we find serenity in our coming and going and wisdom from the experience.
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It’s perfectly normal to feel what you describe. Being there for someone close to you while they are dying is extremely DRAINING ! This is situational depression. I wouldn’t recommend that you go on meds for this unless that is what you want to do. They may help a little bit. Discuss with your doctor if so. But dying is a normal life process.
You need to decide how to get your own needs** met while she is in hospice care. And it could take quite a while. It sounds like you feel ready to return to work. If so, do that. Just be careful to not get even more drained by employment in addition to your emotional work. Do you need to talk with someone about your feelings while going through this tough time ? Hospice has a lot of resources for people in this stage AND for their families. Maybe a support group ? Or individual counseling ? Ask the hospice team what is available. Do you need to add something that helps soothe you ? If you have any religious beliefs, this can be a huge source of strength and hope. Try to spend time doing something that brings you joy. Give yourself some of that TLC that you have been giving to your mom. Take some breaks, when you are not thinking about the dying going on around you.
I wish you strength and hope and comfort in this very tough time. Know that it will end. Eventually all this will be behind you.
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Maybe you need antidepressant .....is mom on hospice ? If so ask social worker for a respite it is a small amount of time an ambulance picks up mom brings her to a NURSING HOME FOR ABOUT 4 to 7 days then you can get a well deserved & needed BREAK ......YOU WILL FEEL SOOOO REFRESHED !if shes not on hospice get her on ...good luck hugs and prayers to you
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Take time for yourself my Mother passed 3 weeks ago it is hard Mom loved just 2 months after being sick I never wish her gone she was my life I quit my job for 12 weeks never regretting it but depression takes a role stay strong it can lead to depression take time for you it will come.
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Sendhelp Feb 2020
So sorry for your loss Vicki.
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Make a plan for yourself. Spend your space time (evening after bedtime?) and research and learn everything you need to know...start putting an action plan together.

plan out your life, work toward achieving that goal.

staying busy and working toward fulfilling your own life goals...that is how to beat depression brought on by feeling stuck in you situation.

i spent years learning everything about RV life. Decided I needed to build one for myself....that was a massive undertaking...filled every night for a year researching all the details. I spent about 4 hours a day actually working on the RV once I bought one and gutted it.

after my parents died (within 1 year of each other)...I finished the RV and have been full time on the road ever since. I went to Alaska and Mexico and every place in between out west. Spent a year in Florida. I am currently in Arizona, and plan to visit the Canadian Maritimes this summer.

find your plan for the rest of your life...and take steps every day toward achieving it.
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I feel your pain and understand how difficult this is for you. I have had my mom living in our home almost 5 years after she suffered a stroke at 93. My husband was a huge help until his health declined almost a year ago. Since then I have been caregiver for both of them. You won’t feel better until you put yourself first and take care of you. You still have a life to live. The thoughts and feelings you have are normal. I have had some myself, followed by huge guilt for thinking that way!! Find a way to have an outlet. Just a 40 minute walk around my neighborhood helps me immensely. With help from a hospice volunteer and a paid caregiver I am able to get out a for a few hours each week. Reach out, ask for help. You can not do this alone. There are many resources out there. You just have to find what works for you. Sending Hugs and positive thoughts!!
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No answer, I'm afraid, but I just want you to know that you're NOT ALONE, and I'm right there with you!!!! It's NOT a good place to be and, YES, it IS quite depressing to say the least!
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I am struggling with this issue myself.  I've considered an anti-depressant.  I agree with some of the other posters that this could go on for years...you just don't know.  Going back to work would not only help you financially, but it would give your mind a chance to focus on something else for part of the day.  Can you get care for her during the day while you're at work?  Or are you up all night with her as well making going back to work not an option?

My mom has dementia and we are on year 8 with no end in sight.  She is physically healthy otherwise.  Watching the end of someone's life drag on and on is hard...especially if they have no quality of life, it does make you pray for it to end.  I'm sorry you are dealing with this and I hope you can figure out some way to return to work or at the very least get someone to relieve you for part of the day so you can catch a break.
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helenb63 Feb 2020
My mother too has little quality of life but not for physical reasons; she is quite healthy for an 85-year-old who won't do any exercise at all yet has somehow survived two lots of lung embolisms and pneumonia. Her problem is narcissistic personality and being unhappy wherever she is, and having a totally negative, self-centred view of the world. Without this she could be having a nice enough life. Her negativity is spreading to us and we are all getting depressed, but can't see a way out of it. This situation could go on for years and that scares me a lot, as I'm not sure I - or my marriage - can take it.
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My mother had a friend in AL who was on hospice care for 3 YEARS before she eventually passed away.

Take the advice given to you here and go back to work. Get some in home care for your mom at this point. I don't know how you can possibly turn your thoughts 'positive' right now. In some situations, there's just nothing positive to celebrate.

Wishing you the best of luck moving forward.
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Might be time to return to work and get your life back on tract. If she is at home, a caretaker can be hired, if she is in a facility, let them care for her.

She could live for another year, you never know, don't put your life on the back burner waiting for the eventual.

Sending support your way!
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I don’t believe this has to be an either/or situation. Since your mother is on hospice care, speak with her nurse to find out if it’s possible for your mother to have home care while you work. It’s not good for you to be without an income for that long. It’s most likely impacting your pension and health care as well. It’s also not a good situation for you mentally. Speak with hospice and share your feelings. Hospice is there for you as well as her.
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Vivian711 Feb 2020
For some reason, I can hear your voice and I like you.
Great advice you give.
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