For those of you who are caregiving and living with the person you are caring for 24/7, how are you coping?

Vjewel,

You said you’ve lost your compassion, yes, I can understand. Sometimes I feel the same way, which I think is almost unavoidable when we deal with injustice on a continuous basis, don’t you think?

I then have to, first, forgive myself, because I feel guilty about losing my compassion towards someone I love (to your point of feeling mean) when I KNOW the person cannot change; and then I’ve to try to find compassion in my heart again, despite the continued rain of injustice...talking about rain, it’s like trying to get dry while storming and raining non stop, without having a dry place to go to. Maybe a weird metaphor, but very close to how trying to find your compassion in the midst of constant injustice feels like to me. The only dry place to go to, is God’s heart to me.

So much, really so much of what you describe about the situation with your brother sounds incredibly familiar...Dwelling in illness! hypochondriac, rejecting the food you make, addicted to -in the case of my LO clonazepam-, saying you’re mean, extreme dependence, etc, etc. So many similarities.

Yet, there’s a key difference between your situation and mine, I only take care of one person and , knock on wood!, I’m relatively healthy. I’m pretty sure you’ve overdrawn your health account by allowing yourself to become an spare part (very real description of what this feels like).

I think it’s time Vjewel for a serious reassessment, because you’re a mother and I’ve the feeling in your heart being there -as in literally being there, alive- for your son is a priority, and I’m afraid this situation is seriously taking away your life, not only your quality of life, but your actual life.

I don’t know how old is your brother, or any details about what he could be a candidate for, but there has to be something, some sort of system assistance he has to be a good fit for. You probably never wanted your brother to resource to external help, you wanted to do it yourself with love, and you have!
But stop and look at the situation, do you really think he’s receiving the best assistance possible? I don’t think so. And it’s not because you’re failing Vjewel, not at all, it’s because he needs a different type of help to deal with his phobias, anxiety, dependence, panic, etc. After a while, taking benzodiazepan is of no help but detriment, and whoever is prescribing that to him without sending him to be seen by an specialist is not very good.
So the situation seems pretty poorly handled for your brother. I don’t think you mentioned what physical illnesses he suffers from..seems like his mental and emotional status are the main problem.

Out of love, I think you owe him to find a better arrangement that excludes you as his 24/7 caregiver, ASAP. I encourage you Vjewel to start doing research and not feel guilty about doing so, because it is for his own good.

You don’t mention how you’re doing with cancer? Like I said before, if you want to be there for your son, you’ve got to look for your own wellbeing, not out of selfishness but out of common sense.

I’m a firm believer that God is with us always, and he sees each of our circumstances. Grab on to him! Do it with trust and blind faith, because He really never fails! But as you grab on to him asking for strength and wisdom, also ensure to take steps towards a change! He will help you, don’t doubt that.

I’m pretty clear that our duty as Christians is to do good to others, no matter what. So, I’m encouraging you to do good to your brother by finding a different arrangement for him and his life that really means the improvement he needs. I’m sure you made a world of difference in his life! But I think your mission needs to change its shape now. It’s time.

Lastly, look at the amazing blessing you’ve, being able to recognize the good in every situation, no matter how hard:

Your son is schizophrenic..BUT he’s a tremendous help and a blessing to you!

Your husband has many health problems, BUT he’s a good attitude!

Despite the stressful situation with your brother, YOU have made many improvements!

Do you know how many people are completely blind to the bright side of life? Many cannot see it, even if in front of them.

That is the evidence of the love of God in your life. He not only keeps you going, but makes you SEE the light in the midst of darkness. Hope you really realize this, so you also realize you are not and will never be alone!

May He bless you greatly and help you find the best path possible!

May God help you Vjewel.
He is our only hope in this life.

Wow, Vjewel. You have a lot on your plate. Blessings to you.

Just found this site and I feel that my feelings are justified . I am a multiple caregiver. My son , 38 has schizophrenia . He is a tremendous help and blessing to me . He does have episodes that are devastating , and has odd ways .
My husband has many health problems, dementia, copd , incontinence ..he has a positive attitude . I take him to many doctor visits . Which is an all day event , quite often. I help him with meds , and keeping track of appointments . We had plans to travel . I like to get away to see my grandchildren .
I also am caregiver to my older brother , who I moved in with , and have made many improvements . It was my parents home , that he had lived in all his life 
. He dwells in illness , having complaints daily , gas, constipation , taking bp frequently thruout day .
He will only eat certain foods , does not contribute regularly to food expense ... says he can't eat what I fix .. but does , has errands almost on daily basis , will not leave house .. today he decided his kidneys are failing ! He has Drank about 1/2 cup of water , just can't drink !  He will not change routine he has , meals, and stays in bed at least every other day . He has not had a bath in years , because he won't pay for facet to be fixed in his bathroom , he won't spend money .  
He is hypochondriac. !!!
I am so frustrated that I am grinding my teeth down . Oh yeah he is hoh, hard of hearing . He cancels dr appointments , and does not ever want me to leave ... driving me crazy !!!!!!
He is addicted to benzodiazepines , because he is so anxious .
He told my  older brother who is no help to me at all that I am mean . I feel mean . I have lost compassion , he is so self centered . I resent that my life is being used up with his neurosis .  This older brother thinks I should stay here and cook and wait on him .. I had breast cancer this past year and he didn't think I should leave to get treatment .  
It is crazy situation .... I feel like I am a spare part .  I realize he is mentally ill , 
his only care is for his pitiful self .
I just had to vent !!
It is a place I never wanted to be , but here I am .  
I do best I can  .  

Added...i have no children, but I also have no siblings. So my Mom’s care, whatever I can figure out, falls to me. Fortunately, she has finanicial resources and so do I...so that part (while not infinite) is not an immediate concern.

I just have to comment...take with grain of salt, as I have no children. Your 17-yo, Goddess, is modeling on your behavior. Don’t let her do it. She should feel free as a bird, selfish in every possible way.

Find ANY other help...but not your daughter. I apologize if it sounds harsh.

Blondgoddess - you wrote:

"I also feel really guilty when sometimes I wish it were all over, that way dad wouldn't have to suffer anymore and I could grieve and then have my life back.....I cannot explain how guilty I feel when those thoughts come up."

I totally understand your thoughts because I have the same thoughts, too. And so do A LOT of us here. It's our survival instinct crying out for relief. Many of us here are literally killing ourselves to care for our loved ones. I wish my mother would end her suffering before she losses her dignity. I wish the same for myself, too, when I get old.

I used to feel very guilty, but not so much any more. I won't ever share those thoughts with anyone who has never been a caregiver and won't understand the tremendous stress it puts caregivers, and the lack of life quality our loved ones have to suffer before they pass. I used to think longevity was a good thing. Not anymore. It's a curse when you have no health and no life.

Don't feel guilty. I wish you peace with your own thoughts.

p.s. Are you a spiritual person? Do you believe life continues after death? If so, take comfort in the that belief that your dad will not die, but will just move on from his broken body into the spiritual realm.

Not so well. Taking care of my 83yo dad. He suffers from Parkinson's, chronic kidney disease, he's had several types of cancer including bladder cancer so now he has a urostomy. He also has borderline diabetes, and high blood pressure. I do have my husband and daughter to help me, but my sister is useless. Alcoholic and addicted to prescription pain killers.
I have to agree with most answers that it simply isn't that easy to "take more time for myself" or "take a vacation". Yeah right. I wouldn't enjoy myself as I would be a mess worrying if dad is okay.
I'm not quite 40 years old and I am totally dedicated to my dad. I wrestle with the thoughts that I am neglecting my husband and our 17 year old daughter. I know she is extremely close to her "gpa" and she is more worried about his well being, but it doesn't stop me from feeling guilty.
The thoughts I feel most guilty for having though, are when I get frustrated and think to myself, why did I have to take this on? This is usually when I'm super frustrated with my sister. I also feel really guilty when sometimes I wish it were all over, that way dad wouldn't have to suffer anymore and I could grieve and then have my life back.....I cannot explain how guilty I feel when those thoughts come up.
The absolute worst thing I think that I deal with though, is nights like tonight when all I can do is think the most negative thoughts about how dad is slowly dying and how it won't be long and I'll have to say good-bye. These are the nights that I have a hard time coping. I cry ALOT. It upsets my daughter, I know, but I cannot help it. I just get so down and I don't know how to cope with it......

Kathy2468
We might outlive those we are caretaking, but in what shape? My dad lived to 100 yo. My sister took care of him and neglected herself. Now she is in need of a kidney. While taking care of him she ignored constant headaches. He did not have Alzheimer. She is in her 50s.

Oh my God. I am so tired. I have only slept 2 full nights for the last 3 months and it is all so hard as I am no longer young any more either. I feel guilty complaining as what all of you are going through is so much worse than what I have to go through. I guess we just have to pray for strength for all of us to get through all of this. What other choice do we have but to take it one day at a time, and pray we outlive who we are taking care of.

I should have read through these posts before I just posted on another page about wanting to pull my ALZ dad out of a nursing home back to his own home where I can move in and take care of him, assuming he has just weeks to go. I still so much want to do it, but reading these posts helps me see the reality and maybe as much as I would like to, I just cannot do it.

My mind has turned to mush in the one year I've been caretaking Mom 24/7 (I have more going on in my personal life that's almost crushing by itself). I have no energy and force myself to slog through a day. Somebody can ask me a question when a particular thing happened and I can't recall if it was last week or two weeks ago; nope, it was yesterday or this morning. It's scary. I'm sure I can recover from this when I leave to go back to my home in another state, possibly in a month.

Mom seems to now be in the "preactive dying phase". After almost two days of being in and out of sleep and eating little then sleeping 18 hours straight, yesterday hospice brought a hospital bed which Sisters and I set up the living room. She could pass any time yet could still be here for a year! For her sake, we wish it was very soon. She's suffering even with 19 prescriptions. The anguish in her eyes is gut-wrenching.

I've got my car up for sale in preparation to leave for home. A lot of guilt. It's terrifying to me and guilt-producing to be working toward heading home when we have no idea how much time she has left. I've even told Sisters I'm rethinking leaving! I don't know what to do. There are so many times we have read on this forum: I wish I had a crystal ball.

Celmira9 and kbuser,

Thanks for your kind responses. I don't quite feel entitled to be on here as my mom doesn't have dementia or require physical care... yet... but it's the "I'm the only one" aspect and although I work full-time (albeit out of home ), she seems to feel like all of my non-working time should be "playmate" time. And if it's like this now, without everything else like so many others are doing physically to care for their loved ones, I can't imagine what the future holds. Oh and Celmira, I so wish I could give you some of my extra 50#. You really really are going to need to put yourself first. You have value and are still very young, and I am right behind you age wise. And we and kbuser, we have a right to our lives and happiness. Take care of yourselves!

Hi Carerick - 

I know what you mean about not having friends, and limited interaction with family members. I think all of us do. Now that you have the time, friends have moved on and family members are too busy. Since you're having difficulty getting back into living, I highly recommend you post your situation in a separate thread so that more people will see and can give you their suggestions.

Here are some of mine. Not knowing how old you are, but I am guessing you're old enough to be a senior. You can check out the local senior centers near you. I have an aunt who LOVES to go to senior centers because of the many activities and classes that are provided there. She takes up drawing, plays ping pong, talks with other seniors, etc.

Also, check out Meetup.com. There are many groups that get together and do fun things. Check out and join whichever groups that interest you. People with similar interests get together to do things such as walking, hiking, going on a field trip, learn a new language, etc.

If you own a certain type of car and are a car lover, there are clubs for people who own many types of car makes. Just look up on the internet and you will find those clubs. A friend of mine owns a mini cooper and she joined a mini cooper club. They help fix each other's car. They go on trips across the country and have a lot of fun. And if you own a motorcycle, well, then you can join the Hell's Angels. Haha.

Also, if you have time and energy, adopt a dog from a shelter. Dogs are great companions. Save a dog's life and it will give you unconditional love for life.

Praying does help. I am caregiving my 88 year old mother with Parkinsons and she's the same way. If I go into a different room she starts calling for me. Even at night, in her sleep she shouts for me. If I go and check on her she's sound asleep and didn't even know she did it. I tried doing a work at home call center for extra income but it was impossible, I couldn't get even ten minutes of uninterrupted work time. Just try to get away when you can, I guess. I have a nurse that comes Tuesdays so I get to a Bible study group and my brother will watch mom about one Saturday a month. Friends have kind of all gone, they don't understand or are willing to fit into my limited free time.

MyOwnlife. We are practically in the same boat. Only difference my mom has some dementia. She was diagosed with Alzheimer. I also don't think that I can continue with this responsibility of caring for my mom. She will be 83 yo soon. It has been so stressful that i have gone from 117 lbs and 66 yo to 90 lbs due to the stress. My friends do not understand because they have not lived through this. They remind me that she took care of me and she reminds me how she paid for my private school. Like you i sometimes lock my bedroom door to read and use my computer just to have private time to myself and she gets upset and comes to the door yelling things at me. I look like a scarecrow now that I lost the weight and don't want my friends to see me now. I hope i can gain some weight b4 the summer gets here and I cannot hide under the heavy winter coats. I feel tired. Very tired while she gets all the services. And no relief in sight. I pray quite a bit.

My 92-yr old mother lives with me. Has pretty good health for 92. I am single and 64 and meet up with my daughter every couple of weeks for some fun out. The last time, it was on a Friday night and I had such a good time with her that when I came home I wanted to go directly to my room and not have to "report" to my mom. I managed to "sneak" in and close my door and soon thereafter, she started knocking. My car was home; I was obviously back home and I just didn't want to talk with her at all. My one night out I wanted it to continue and listen to my music (earplugs). I didn't answer. She didn't stop, she started banging on my door, going outside to the sliding glass door and knocking and calling out, and then calling my cellphone with more repeated knocks at the door. Luckily, I had locked both doors because of course she tried to open both doors etc.
No, she does not have dementia, but she is definitely narcissistic. I have read everyone's comments on here and admire all of the selfless caregivers ... but I do not see myself being able to continue on with my mother. All she has said she wants is to be in her own home (3 hours away) and am afraid that may be the best, and hire in help for her. My worst fear is that I am being dragged down into depression and that she will live long enough for me to go downhill and we "die at the same time". This goes right along with her lifetime narcissistic personality, that I am just an extension of her, and her needing attention all the time, etc. etc. In her mind, I am just for the purpose of doing her bidding....

I cared for my wife with Alzheimer's for 12 years. Little by little I gave up my life to care for her. She died 7 months ago and now I'm having a terrible time getting back into living. Friends and family were put on hold while I cared for her. Now they are busy with there own lives. I'm having to make new friends. Her family is of no use and mine tries to be there but only if I fit into their schedule. It's tough. I do know God is still in control. God keeps me going.

My husband and I were out of state for about 6 Days. Visiting his mom. My daughter was here with my mother. Everything is ok. I had arranged for aides to be here 2 hours a day but because my daughter decided to stay, we didn’t need them. Bottom line ,
I feel better, my husband feels better , and my mom did fine. Maybe the doom and gloom of being 24/7 can be alleviated by little breaks.

So true Erin. I've thought of this so often.... NO ONE knows exhaustion until you're in our situation... which most opt out of... (I'm also totally whipped)
💕

Erinm60. So there with you. I've answered before but things vary day to day. Good luck to all of us

My parents did their POA in PA when I was in my 30s.. I am 59 now and I have never had any problem, was even able to sell their home due to the wording. However, I would call a elder care lawyer and at least ask about this.

Thanks for the info. My mom is much better this morning. Question: She signed a POA in front of a notary public in 2015 when she was 80 yo and her memory was still functioning. I am not sure if this POA is valid. At this juncture she has advanced dementia. However, she still can remember her name and can sign it. Is the POA valid? Thanks.

Solanu, I am so glad to hear that you will have a person from hospice coming to give you a break. That is fantastic! I hope this visit from her next week is the start of more rest and recharging for you. It seems to be desperately needed.

Celmira9, what an awful situation! It does sound completely exhausting. I am not particularly knowledgeable regarding Medicaid issues at all but one thing I have seen frequently on this forum is the suggestion from experienced folks to consult an elder care/Medicaid expert lawyer (not just any old lawyer, or your lawyer who has handled other things for you in the past) regarding Medicaid eligibility. Apparently there are a few workarounds for too much income to qualify. I hope there is for your mom. God bless you both.

When I read your stories it seems that mine pales in comparison. However, the last two days have really tested me. My mom 83 yo has diarrea. Due to dementia she is at the stage where she cannot take care of herself when she goes to the bathroom. I have spent the night running to the bathroom with her and washing her clothes and bedding and getting no sleep. I am exhausted. If this continues I will end up sick myself. Tomorrow i will take her to a doctor. Perhaps the doctor can prescribe something more effective. I just cannot see myself doing this for a long time. I am 66 yo and in need of care myself and also looking after a daughter who has mental issues. It's just too much. At this juncture she would not qualify for Medicaid because she has a few pennies in the bank plus a small pension and social security. Any suggestions?  Thanks

My husband is 94 with Alzheimers and terminal cancer around the face and jaw. I am 89 and have been his 24/7 caregiver for almost 4 years with Alzheimers and the last year with the cancer. The doctors have put him on pallative care with a Hospice nurse who comes twice a week to change bandages and gives a general exam. In between her visits I change the bandages as well and the bleed-outs at night plus all the things that go withAlz and housekeeping as always. We have been married almost 66 years and friends for 69. He knows me and is in denial regarding any and all of this. I do not allow the word cancer used around him . We were both professionals and owned two businesses and raised three children who live elsewhere and who have definitive ideas on how all this is to be handled. He has always had perfect health and considered by doctors as upper 1 or 2% health for men his age. I have had cancer as well as stomach surgery plus much more and am left with digestive problems left from radiation. Reading this artical made me realize that I have reached compassionate fatigue and have been near the burnout. I was taken to the ER a month ago and after tests came out OK but during those hours I made up my mind to get a volunteer that can come from time to time so that I can get out shopping or lunch with a friend. I had started attending a caregiver's support group at our senior center while my husband attends an Alzheimers group in the same building for an hour and a half and then home again by DialaRide since we don't drive anymore (which has been the worst inconvenience of all) . Hospice has sent a very nice woman to meet us and is coming next week so I can get to a close shopping area without having to worry taking my husband who has to sit and wants to come home almost immediately. I'm feeling relieved already.

But by the grace of God go I.

It’s just so hard. The loss of privacy. The telling them when and where you are going. The constant repitive statements. The loss of their personality. The ground hog day movie. Every single day the same. Not knowing when it will end. People telling you , what you could / should do better. No help. Husband getting resentful. Daughter not coming back to visit. What did I do in a past life ??? Must have been a terrible person.

Mom was 40 when she had me (the baby of the family)..... bonus! cause I'd never have been able to look after her if I was 10 years older.

ODG Cwillie.. I am 59 and my mom is 87, just starting to get "slippy" and still pretty with it.. and I am still tired! It's not something I wish for my 30 YO daughter,,, but she once (at age 10) looked at the new NH they were building near us and innocently said "I'll put you and Dad there". I threatened to change the will! But no kidding.. I hope she never has to care for us!