The Caregiver... How are YOU doing today?

Man, all this stuff going on. I can hardly keep up. I'll remember all of you in my prayers. It can be so, so hard. And I feel like I'm just a rookie here, since I get the second half of my weekdays, and the full weekend, at home with my family, while most of you are full time caregivers. Some of the things you all have to deal with is mindblowing; I can't pretend to know exactly what it's all like, though I've had to deal with a few things, but I do know that it's hard, and want you to know that you all, each and every one, have my sympathy. And I feel very glad for those of you who at least have someone with a sweet personality to care for :D
It'll be back on the battlefield tomorrow morning for me; we'll see how that goes!
All of you get the rest and relaxation you need tonight!

It is difficult to understand how we can go on and on being caregivers in a situation that seems like it has no end. We can love our partners, mothers, dads etc., but we are giving our very precious lives and time that we will never get back. I personally must not dwell on that thought or I would get depressed. I know he would be miserable in a care home and I would miss him, so result, I go on caring for him and doing my best. So far no dirty diapers to clean or change. When that happens, I just don't know how I will react. I have all the compassion possible for all of you who are doing this job. Many relatives must think that things just get done magically and never think about us who are doing the "things" that need to be done. They go on with their lives as though we are nobodys. It is sad.

My turn to vent. My poor Momma has a UTI. I can tell because of her behavior. It was really hurting her so I called the doctor Saturday and he called in nitrofurantoin 100 mg 1 every 12 hrs for 5 days. I am suppose to take urine sample in the way I have always done it. Well now they changed all the rules. It has to be their bottle. That made me mad. They wanted me to go home and make her pee in the bottle. She has some dementia and can not understand how to do this. I always have to keep her potty clean and get it that way. But she poops a lot and it will be a while before I can get a good sample. This is the way the did it in the ER. So when I need to get a sample I clean her potty with bleach and wash it with soap and water. rinse again and again and dry it and wait. They do not understand how hard this is. I also put it into the refrigerator with cover on it in a plastic bag. Also Mommy is not eating much again. Her acid refux is bad she coughs all the time. She falls asleep talking to me. Her breathing is different, very weak and ever since she fell in May she says her tailbone hurts. At least once a week she says this. She has a funny smell too. She doesn't want me to tell the doctor anything. I think her old cyst on her tailbone is acting up again and she tries to hide it from me. But I see a small stain of blood almost everyday in her depends. She said hemorrhoids. She says its her leg that hurts from arthritis. I'm talking to you all trying to get brave and take her to the doctor tomorrow no matter what she says. She wants to live til February because my daughter is having a baby on her birthday the 2nd she will be 95. Maybe it is time for hospice? tears & hugs

Take her to the doctor or the ER. Is your mom on Oxygen? Make sure she gets her oxygen level checked. Your mom has several symptoms that my mom had. The coughing with the acid reflux, no appetite. Does she sleep propped up with a bed wedge or a pillow to help with the reflux?
Good luck.

My mom had frequent UTI's. The only way we were able to get a clean sample was with a catheter. I finally started doing that after three contaminated samples in a row. Too hard to try to keep them clean, to say nothing of getting them to understand what they are supposed to do. Some doctor's offices will do the cath, all er's should. Just tell them that is the way it has to be.

And if not a cath, ask for a "hat" a plastic bowl designed to sit on the rim of the toilet, beneath the seat, then pour into the container. I do not think it is the doc's rules that have changed, probably, insurance as we see changes like that as well.

You all should google "family caregiver platform project". It is an effort to get out legislators to understand caregiver issues, the money they save our country by providing free or low cost care, delaying and sometimes eliminating the need for Medicaid in the future at the cost of our futures, financial, emotional and careers.

Love you all thank you for info. Today will be a busy day and heads will roll. Talk to you all later, hugs

College, let me add a useful phrase: "I can't possibly do that". It comes in handy when officious types try to get you to do things their way. "How can we make this work for my elderly parent who has dementia" is another.

Well today is Dad's one year anniversary of Residing at AL. His Alz is slowly progressing more so since April.
I took him out to lunch today-his usual burger, fries and a beer.
Then he had a ride which I arranged in a T-bucket hot rod as there is a convention later this week and a FB friend from Texas was attending.
I'm still doing outings while he still is mobile as there will come a time when these will end.

college I can sympathise except my mother was in a nursing home, i do not want to scare you early if you do not have hospice please contact them, my mother had all those same problems get worse the week she died. Especially if your Mom being 95. My mother was 85. They pick their time, she may be holding out for her birthday as mine did she made it two weeks past her 85th birthday. But, the quality of life diminishes one they stop eating. I must admit it happened a couple times in the 8months she was sick, then would not eat then having a gagging problem and then she ate good for awhile when she overcame her fear of eating, it seems it happened at various stages she entered into of her decline. Best of wishes that you have a better ending, but I would prepare yourself for the near future.

College let me add a phrase. You may see a doormat but this one does not have welcome on it. Mind you I wasn't very good with the social worker who rang today. I had planned to be polite - didn't last more than 2 seconds I reckon. It started well I said good morning! When she started offering advice on things that were clearly beyond her scope - done the research.... found the scope of their work and its not as broad as they would have you believe in UK... I sort of lost it.
I did raise my voice...I said 'if I had wanted advice I would have asked someone who knew what they were talking about'....the conversation was very short!

Jude, I'm sorry, you are hilarious :D

College, I hope that your mother starts doing better; that they find out what is the problem and are able to take care of it; and that she makes it to her 95th birthday. You sound like such a loving, caring daughter; I hope you are able to get the rest you need, and I hope you are surrounded by family members and/or friends who build you up and help you however they can. God bless :)

College you are doing all the right things. Let the Dr know before he sees mom what you are anxious about and mention hospice. you can write a list and hand it in an envelope to the nurse. If Mom is aware enough to want to know what it is. just tell her if is a list of medications to save time. have them do a full exam including her tail bone. It can be done with her turned on her back and covered with the sheet. If they can't get a clean specimen then request a catheter. What you are doing to clean her potty sounds adequate to collect a clean specimen and just as clean if not better than a "Hat" i don't believe they are sterile. Have hospice come in to do an evaluation and they will decide if she is ready. many people do set a goal like the arrival of a new baby and to everyone's surprise many do make it.

Jude you must be the worst nightmare for every healthcare provider within 50 .

Absolutely Veronica and I fully intend to stay that way :)

I WILL have the best care I can get for my Mum. Does she deserve it - probably not - but she will get it because I will not allow the professionals who have NEVER done full time 1 on 1 care to a) tell me what to do and b) tell me I must do it.

Now the nurse who is coming out has done care work (so she will have an idea) but even she says that 1 to 1 familial care is very different from nursing home care because of the ties that bind us to our parents. Even if we dont like them much we still love them and care about their well being so when your mum says to you for the umpteenth time please give me enough pills so I can just leave this world it still bloody hurts.

However the nurse quite honestly told me that when you hear that from 6 or 7 people every night you learn to handle it and distance yourself from it which is nigh on impossible in a familial setting.

The social worker said if you sat and talked with her more often then she would be happier - it's what she wants and it's not a lot to ask.....well yes so it might be but once again I am clearly NOT in that equation and that's what rattles my cage and
YES IT IS A LOT TO BLOODY ASK - well it is for me. It's not that I don't sit and talk to her - I spent more than 4 hours doing that yesterday - PLUS meal times massage, toileting, bathing, while I was cleaning and dusting etc but to do more than 4 hours? NO WAY can't do it sorry well not sorry actually I need a life too

If I had the gumption, I would have told the social worker, "Well, there's only one of me to do everything. I do talk to her when I can. Since it's not a lot to ask, why don't you drop by daily, just for 10 minutes of your time, every day, and have quality conversation with my mom? This will give me an extra 10 minutes to do more chores." Watch her quickly back pedal or throw it back at you.

Dear god book no - if she came to my house I wouldnt answer the bloody door

No Jude, SOMEONE has to teach her a lesson. I really hate it when people give me caregiving advice and they have no experience to back it up. Textbook knowledge is fine as a beginner. But, I think - hands on experience is needed. Not everything is black and white (per my therapist...I'm still working on it.) Drag her in, and You flee so that she has to handle the situation. Hands On Experience. {{chuckling... 'wouldn't answer the bloody door'...}}

College, I'm thinking of you and hope things smooth out for you and you Mom! You are an Awesome daughter! And doing you very best! Sincerely, Stacey B

Gladimhere, I did sign up for family caregiver project forum & I told everyone about it on facebook, thank you. babaloo, I said those and a few more, I also asked them if they really had any clue of what I'm talking about. Thank you,lynnemk, all of the info helps me get stronger, thank you for sharing. Jude , you are right, good job, awesome, proud of you! Leah, thank you for the kind words, Veronica, thank you for support, Book, you are doing a good job too, you are very strong to deal with your trials, Stacey, thank you. I am so blessed to know you all and share stuff with you all! I just love each and everyone of you. You all care so much! I am very strong in personality and becoming very head strong when it comes to my Mommy. I have always been a person that you have to reason with, ha. That day at the doctors office was sad. They were jerks to me and mad me cry. I waited for the doctor to call me and no call. I prayed and got ready for battle. The next morning a called and told them I was upset with them for not calling us, my Motther is very sick and somebody is going to do something for her today. Why didn't the doctor or his nurse call. No answer??? She said I'll check, then she told me Mom's doctor was on vacation and she would get his nurse to call me. She called in about two hours. I told the nurse a short story of the jerks and that she needed to call Mom's dr. She said she had and he said we needed to have Mommy evaluated for hospice. She said Mom's doctor wants us to go to ER and they are waiting to take care of us. I thought right, ha. Well when we got there they took us right in and started working on her. We got there at 11am and stayed till 5pm. Mom's has swelling on the tailbone cyst, he said jus try to help her sit on something soft and watch it. We may need to do the wound care center, She is still sore. He was going to relieve some pressure on it but changed his mind?? The did all of the tests they could think of and said she has heart and other body parts of 65 yr old ? But she has sinusitis, UTI and also did a culture to find out more on Infection in urine. They did a ct on her brain too, no tumors or masses said she was confused, and told me all of that was enough to make anyone sick and confused. They pumped her full of antibiotics and told us to finish the ones she got Sunday. We got to doctor next Thursday to do regular 3 month check up and get other results. Mom's doctor will be back from vacation and heads will roll. She still won't eat much. Still sleeping all day and talking a lot at night. I have red eyes. I'm so tired, I will get out the Tylenol pm tonight. She was a tiny bit dehydrated, not bad they say. She drinks about 1 1/2 bottles of water per day (16 oz bottles). She will drink one ensure every day. few crackers and some cheese. I got her to eat 1 activia and a few bites of banana bread for dinner. I respect people that deserve it, but the girls in the front office were jerks. No customer service at all. I was in customer service of some sort in all of my years of working and I know how to act. I took course in it and have certificates. I take it very seriously, So I can battle them on this too. I have 36 yrs of customer service. They don't have a clue! GOD Bless the Caregivers, Hugs and love & prayers for you all!

College, you might want to try ZZZQuil, it is wonderful, don't think I would have survived the last four years without it. Try to get some sleep, thinking of you and Mom.

College.. wow... you are so pro-active with your mom's care. I hope one day I can do that. I was reading your post with awe. Yes, I do believe you need to really get that deep sleep in. It sounds like you will need to be alert when dealing with the medical community. {{{HUGS}}}

Book. last night things worked out so I slept 7 hours altogether. I feel much better. Gladimhere I will get the ZZZquil, I put it on my list. Thanks. My Baby daughter is 42 and has the twins three and new Baby due on Mom's birthday. She brought a banana bread she made for us yesterday. She has a big job already with 2 twin boys. But she comes around for an hour or so two or 3 times a week. My middle daughter is 44 and has three older children, she comes everyday for lunch with Mommy. Her children are out of scholl so they try to help me cut grass and pick up tree limbs. Thank GOD. She got Mommy to eat a few spoons of cottage cheese and peaches yesterday at lunch. Yay! I do have people that do care and pray. They see what I'm going thru. Just a kind word helps give me strength to go on. I really appreciate my Grand Children trying to help me. My 2 daughters also. I have an older daughter that is narcistic, she is 50 and comes around when she needs something. I surprised to see her once a month. She lives a block away. All of my girls live within 5 minutes from us. Lotsa hugs for you all! Have a wonderful day!

21 months ago my beautiful and amazing mom died in my arms, in our home. Since that time, I have been alone with our faithful dog. I've taken him for walks early in the morning or late at night, played catch with him, taken him to the park, bought him a new chew toy every time we go to the store, and - of course, sleep right beside him when we take our naps and go to bed for the night. He is always right beside me - in the car, in our home, everywhere. When I've had to leave him at home (if it was too hot to leave him in the car), I would greet him and acknowledge him and give him a smooch like I have always done for years. At the end of June he suddenly stopped taking a treat when we'd come in the house. He started losing his appetite. I took him to the vet and they run blood tests; they found that he was anemic and his platelets were low. The next day I took him back for xrays. There was a 10cm growth on the head of his spleen. I walked with him and prayed that God would heal him - heal him like he had healed my mom miraculously so many times. My dog died in my arms on Sunday, July 5th. I am in shock that my dog, our dog - my mom's and my dog - would suddenly get so sick and be taken from me. Why would God do that? I am utterly alone. I haven't yet caught my breath from the death of my mom - and now my dog is gone. Why would God do that?

Monday, I am so sorry. I kind of know what you are feeling. My mom was placed about six weeks ago now, so I feel as if I have lost her. Was then kicked out of Mom's house by my wonderful siblings, staying at a friend's house with my dog. This has been stressful on her too, and the first morning I woke up here, she wouldn't move, I thought she was gone. My heart just sank, tears came to my eyes. But, thank goodness, I guess she was just absolutely exhausted from all that has been going on here. I do not know what I would do without her.

I am so terribly sorry to hear that your dog passed, he is now with your Mom. Take your time, this has got to be very depressing. When you are ready, consider adopting a shelter dog, there are so many of them that need good homes, and I know you have one of those.

BIG HUGS, Monday! If there was a way to give you some great big wet doggie smooches via the internet I would do it. I have two of them who would happily donate some of theirs to any lover of the canine species, or, well, actually pretty much anyone...

Monday...im so terribly sorry about your doggie. There is nothing better for the soul and spirit as a loving dog/animal. They are always there ready to love. Take some time to grieve, as you should, and then find another little soul to love and who will love you. It will be the best medicine for you. Sending you hugs.

Glad you are motivated to action, that is the only way our mothers go on so we have them taken care of. I too was in a customer service position so that I think gives an insight as to what we expect how we expect it. we know how demanding customers were demanding of us when we were working. We can expect no less when our mother's lives are in our hands. i hear your frustration with inept people who cannot take care of the simple things. My mother used to look forward to ensure everyday that I would bring to her at the NH. I guess she knew I would come with it as well. Until she could no longer swallow or eat. She knew not eatting was her way out of this world so she defied any attempts to give her anything. She is free of pain and the stress of life has ended. We miss her but not to have her live out her days in pain.

The only thing I look forward to now is my own death and being with my dogs and my mom and dad again. Nothing else really matters here on earth. All the people I have loved and cared for are gone - my mom, my dad, my aunts and uncles that I was so close to, my dogs. My siblings are married with kids and their own families and live out of town. My friends don't call anymore. I haven't lifted the blinds since my mom died. I don't care about anything or anyone any more. Everyone I loved and cared for is gone. My dog was the last remaining love in my life. And God took him from me. My purpose is over. What's the point of working to make money to pay bills to live in a home where no comes over and no one cares about the things here that have so much meaning and love behind them? What's the point? What's the point of it all?