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

My precious Mom passed away early this morning after being on hospice care for 2 weeks. Her last real meal was breakfast on Dec. 1. She ate and drank only a tiny bit each day since then. Yesterday she refused to have anything. She wouldn't open her mouth for morphine either. After the health aide left she went back to sleep. At midnight I saw her eyes were open. I asked her if she was thirsty. She said yes. Then she wouldn't open her mouth to take any water. She looked like she went back to sleep. After a while I realized that I didn't hear her breathing or any usual noises she made. I checked her breathing and pulse, then called for the hospice nurse. I said my last goodbyes and told her to save me a place in heaven.

Your approach and attitude is TOTALLY CORRECT!

I have lots of ideas, BUT, with so many previous responses, it is more then likely that what I think at this very moment has ALREADY been duly noted, argued, discussed and still the question goes on! I am a senior looking for somethiing new as a living and have tons of experiences as my background has dealt with these kinds of problems over and lover and over again for clients and family, going back to my own parents and grandparents and dealing with the new younger generation on this very difficult but VERY important topic.

This entry is not consistent with the spirit and intent of this particular thread, so I hereby give my permission for the sponsors here to DELETE this entry! It is, to be sure, only my view and self-serving, but the need is there. Don't overlook the significance of this entry.

I deal with caregiver burnout too!!! Just know that you are not alone. I've put my life on hold to keep my Mom out of a nursing home. I've seen how overloaded nursing homes are. I just have to tell myself that one day Mom won't be around so I'm going to enjoy what time I have left with her!!!!

Hi PolarBear. That’s great.

Polar Bear that is great. I hope that it works out well. Best wishes

I have a bit of good news that I want to share. My Alz mother who has been living with me 24/7 for over 2 years is going to move to an apartment with her younger sister (my aunt).

The apartment is within walking distance of my house. My aunt agrees to watch my mom when she's home. My aunt won't have to pay rent. I will go there at least twice a day to check on my mom and give her medication. My mom will still have her daily outing with me, and 2 times a week outings with a sitter. I will also have another sitter who will come and stay with my mom to keep her company a few days a week during the day. When no one watches her there, she will come to my place and hang out in her own room.

She won't be at my place 24/7. That will give me and my kids much needed breathing space. My kids are so stressed out by my mom, and so am I. Next week, my brother is going to come and help move her stuff. I hope and pray that this arrangement will work.

Both my brother and I will have to chip in more money to help. For my sanity and that of my kids, it's worth it. My husband is very patient and he doesn't mind my mom living with us, mostly because she doesn't bother him so he's unaffected.

I have been there, done that - four times. I hate to say this but it is the honest truth and it must be said. In most cases, I assume the caretaker loves the "patient" but if that patient has developed dementia, very bad behavior, hostile personality and all the rest that goes along with the aging decline, then the caretaker must consider some simple facts. Things are NOT going to get better, they will only get worse. Their presence and what is happening with them is affecting YOU and your FAMILY in a negative way, then you MUST find a way to deal with it - either you hire someone (very expensive) or you seek financial help (there are ways to do this) and place them into a home where they will be safe and cared for. You cannot allow them to destroy you and your family. They have lived their lives, they are no longer who they were and now it is YOUR turn. I know this makes some people feel guilty but it should not. YOU deserve the NOW. Do the best you can and take care of yourself or your guilt will turn into hatred and things will be even worse. Don't let this happen.

John may God give you courage, strength and wisdom through this hard time. May He wrap you in His love and help you find peace and acceptance in your moms passing. Through Him you can do all things, you will be okay and find your way.

our thoughts and prayers continue to be with you. I know it is rough in every way. Hang in there.

Mom has been on hospice care for 7 days. She has been taking in very little food and drink, usually only a few ounces of water and juice and some ice cream. Today she only had 1 ounce of water and a vile of morphine. She sleeps all the time except when the health aide comes to freshen her up. I don't think she has very long. It would be easier if I didn't feel so much.

Johnk, so happy for you that things are getting straightened out. It helps when you know where things stand.

God bless you and your family during this time and give you strength, courage and wisdom.

Happy New Year to you all, may it bring joy to your hearts.

I am feeling better about things today. The social worker came and we had a good talk about everything. I was able to vocalize what I really wanted to say. I feel better about the direction things are going. The nurse also came who is assigned to my Mom. We got things sorted out about what has to be done and whether certain tasks will be done by me or them. She also gave me info I needed on how to do certain things. The nurse told me what to expect and what the expected time frame would be. The chaplain is coming on Wednesday.

Thoughts and prayers are with you. This is a difficult time for you. No doubt you are feeling some depression. But please heed the advice that polarbear and isthisreal have suggested.
Please.
we care.

Hi pamzimm. Tried to answer earlier. Did not see my response. My mother scribbles on paper where and when I leave the house. She has a very limited ability to use her cell phone. And yes it freaks me out as well

Please find a different hospice, they are supposed to help you as well as your mom. That they are being a nightmare is not okay, don't accept it. If you don't have another choice, go up the management chain, have a written list of all the unacceptable things that are happening.

Hugs, this is hard enough without dealing with a poor hospice facility.

John- sounds like you really need to talk to your doctor about your depression, and asap. I'm just afraid it will get even worse once your mother passes. Then you will have no reason to even get up much less talk to anyone because you will have an empty space in your heart.

And do join a local support group to help you grieve.

People here care about you.

How does she record your actions? On her phone? Can you disable that function? Have you told her you don't like it? That would creep me out too

I feel like I am sliding deeper into depression. So far hospice has been a nightmare. I look forward to the day when I can be alone and don't have to talk to anyone.

BlueStarMom: Welcome aboard! This is a great forum where you can share, find help day or night at any hour ---you can come on here and find the answers to your caregiving journey. It's not easy, but with GOD at your right hand, you will get through it.
Llamalover47

Welcome,
It is no coincidence that you have found this site. I assure you that you will benefit greatly from this place. Many of us if not all of us are struggling right along with you. Just reading other posts, you may see that things could be worse, that others have it harder, or find answers to your own situation. But you will learn something from here. I know I have been so blessed since I found this site. There are some amazing people here going through struggles and hardships in this life, by taking care of their Loved Ones. I know this has been a very difficult journey for me. But the Lord is my strength and refuge. He gets me through, makes me stronger, and makes me more resilient to these struggles.
So hang in there. Pray often. And stick around you will feel better.
(HUG)

I’m new to the forum...maybe I just need to vent but my son suggested I try something to connect with others who are caregivers. I am 57 and hubs is 61. Two years ago we decided to take his parents into our home to care for them. MIL had fallen several times and FIL was becoming very tired caring for both of them. She was 86 and he 88. They were excited to live with us and we modified our home to accommodate them. That was the beginning of the many sacrifices that have happened since then. My MIL fell again 2 days before they moved in and she never recovered. We were thrown into 24/7 caregiving with lots of professionals coming and going to provide PT/OT/nursing care but unfortunately, my MIL passed away within 3 months of living with us. In the meantime, my husband lost his job and we were very worried about our financial picture. Neither of us could find work ( I had not been working previously so I could be the main caregiver)...and we ended up having to sell our house. We moved into a very small apartment and now we are crammed together. My FIL has some health issues and has been in a slow decline. People said he would pass quickly after he lost the love of his life ( which is a terrible thing to say to people who just went through what we did to try to save Mom!) but they were wrong. I feel like we are living his life for him and that we are keeping him going. He becomes very depressed at all holidays and we struggle to distract him by taking him on outings and concerts or shows etc. He refuses to bathe other than once a week ( which was his norm and I didn’t know that before he moved in with us) but has bladder issues now and also cannot clean himself well betweeen showers so our apartment smells terrible and also our cars no matter how much I clean. My husband does his share of caregiving and is very sweet with his dad but I am feeling overwhelmed with him living with us. I suggested maybe now is the time to find AL for FIL but my husband is adamant that we must keep him with us because we promised to care for him. My husband has bad knees and I have FM so we aren’t in the best of shape. I worry that we are using up our resources and our health to care for his 90 year old Dad. I am so sad about all of this. I feel trapped and then selfish for my negative thoughts. My doctor wants me to take antidepressants to help me get through this difficult time but I keep thinking I don’t want to be drugged just to accept my life! I go to exercise everyday at the gym at our apartment complex but then dread having to go back home. I wish I was better at handling all of this and could find a way to be happy being a caregiver.

Hi my mother lives with me. Moderate dementia. Now obsessed with me. Records where/when I go. Opens bed room door to make sure I’m there, and searches for 2 kittens that if they leave her sight, she opens and closes doors until she finds them. Oh she also sleeps in family room with tv all night. My day begins with me taking my dog out to go to bathroom. I have to pass her in the family room, and pray that’s she’s asleep. Later I get a bath and the thoughts begin , the miserable , stressful thoughts , about how to endure another day of my activities being recorded, countless repitive questions, the fear of her falling , her follwing me from room to room, just the gloom of dealing yet again with this madness. Today , I had a new thought. No matter what I’m 57. I don’t have 40 or 50 years left. Maybe if I’m lucky , 25 to 30. I can’t or won’t allow myself to not enjoy what I have right now which is health, and a great marriage and daughter, and dog. That’s kind of taking it for granted that I will have the wonderful parts of my life when this chapter is over. Any thing could happen to anybody anytime. So I decided to no longer allow myself to spend so many hours of my day being irrated , miserable, and tense. I’m now choosing to focus on the good parts. I’m not sure how I’m going to do this as much as it has to be done. I guess just telling myself to realize I’m not immortal, and not getting these days back.

I've been traveling 500 miles since 2011 to help care for my parents. I have a younger brother who has lived with them his entire life (he's in his early 50's) but basically ignored their physical needs so I was asked to help out since my sibling was technically "retired". Also, the men in the family seemed to feel care taking was women's work. Initially my Mom was having physical issues and was in a lot of pain. I was fortunate to have a job where I could work remotely and stay with them for several days at a time, cooking, taking her to doctor's appointments, etc. She eventually improved but later was diagnosed with mild dementia. In 2016 my Dad became ill with Parkinson's. My brother initially balked at caring for him and my Dad would not give us POA so I switched my attention to him. I took a two-week LOA from my job only to return and find out I had been laid off. Nine months later Dad dies and my mother goes into full-blown dementia, screaming and becoming very aggressive. For the last two years I've been continuing my monthly pilgrimage to care for Mom. My brother was given POA at the 11th hour, with me taking over the medical directive part. I hired P/T caregivers but there is high turnover because my mother, although much improved, can still be combative, even with meds (which have been adjusted several times). My brother is doing a good job but he had a steep learning curve. At this point he just shrugs his shoulders if she has a problem. Case in point, lately she has begun tearing up the sheets in her room and sometimes her clothing. I woke up early this morning after a lovely week of holiday cheer to find that she had pulled out almost all of her beautiful hair - how, I don't know, but she didn't seem to be the least bit fazed by it. I, on the other hand, was traumatized. My brother just shrugs, like it's "normal" behavior. He's more concerned about the bedroom being trashed overnight. The behavior is clearly indicative of her disease but that still doesn't make it any less upsetting, particularly since she just started doing this. At this point I want to give up too - she's 83 and otherwise in good health. Just crazy as a bed bug. I called the Alzheimer's Association, her doctor, looked online for some solace and solution. AA wasn't helpful, although they tried to give suggestions. Doctor doesn't even respond at this point. Found one study that clearly explained how to view the situation from her point of view, not just the behaviors. It was comforting but it doesn't really help give advice on how to stop the process. We cut her nails, cover her head and hands but then she figures out a way to remove everything. There's still some leeway in managing her condition because 80% of the time she's a happy camper. It's just that 20% where the problems lie. Luckily, she has money from her estate and other options for care, if necessary. Just have to hope my brother agrees to exercise them when the time comes. I've lost most of my hair as well and I'm honestly just tired out from worrying about it. Happy Holidays to you and yours and thanks for listening.

Mom is coming home tomorrow. I just got the hospital bed set up. They also brought an oxygen concentrator in case she needs it. I chose a hospice company that was highly recommended to me. They seem very good. For the first time I feel like I have the support I need. I have high hopes it will all work out.

Oh. I haven't been here in a while.

My CareGiving got better for a bit this year. Hubby was hospitalized for a week for Major Depression. He was better when he got home and interested in things. Then he injured his knee a tiny bit and things started on a down hill slide again.
Two weeks ago he had a Bi-lateral Pulmonary Embolism both lungs had major blood clots.
ICU for two days and the doctors were amazed when they sent him home four days later.
They told him most people die with what he went through.

He doesn't believe he was lucky. Now he is on blood thinners and permanent oxygen. Major Depression has returned and he is very angry that he lived.
Breathing is a chore, eating is a chore, talking on the phone is a chore. He had made such great strides this summer and now ... Bam.

And his sister texts to tell me what I should do to make him happy. I deal with that by telling her 'no texts' 'no calls' and when she told me how distraught she was ...I told her to hop a plane and come see her brother and her mother.
OH. Nope.

My husband's mother has Alzheimer's and the dementia is moving right along with her as well as stage IV kidney disease. She has a legal Guardian.

Things I have done for myself. I schedule 3 times a week for CrossFit at the gym...I do that to coincide with getting some groceries.

My husband gets up with my help each day and stares out the window for an hour or so and looks rather unpleasant. I ask if he is in pain and he glowers at me. He is determined that there is nothing for him anymore. I have contacted his Psychiatrist and an appt is a while off.
I put hubby 'down' for his naps and go outside and do farm work.

It is getting hard to be pleasant and positive with him. Period.

I am going to ask him if he wants to talk with some Palliative Doctors at the VA where we go.

In the past 3 yrs he has had cancer, TIA, Major Depression, Stroke, more depression, and now the Pulmonary Emboli. He says he has had enough.

So how am I doing?
Some days I am sad. When I get outside I am better. I walk back into gloom and doom and wish to be back outside.

Physically I am stronger. Mentally I think I am prepared. But who knows?

Its a hard road John, You hang in there, you are doing a wonderful job, loving your Mom. I will pray that you get all the help you need for her when she comes home. She sounds like she is just tired of things.
Just love her as much as possible. As I know you do.
you are a constant in my prayers.

Mom is still not doing very well. She drank and ate a little bit on Christmas Eve and Christmas day, but wouldn't eat or drink for the speech therapist yesterday. They called me from the rehab last night and said the insurance company is cutting off her stay. She will be coming home on Saturday. I have requested hospice. I am hoping it doesn't take too long to get hospice services in place.

Oh look! There's the edge!

Oh my dear, you are living my life! And I wouldn't wish this on anyone. I realize you wrote this months ago, but knowing my own situation, I doubt yours has changed much. I have no magic words to help you deal with this. If I did, I'd use them on myself. Hang on to your soul, it's all we have left!