This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Good to hear the doll is working, Book. Less for you to worry about is a good thing!
staceyb, You made me laugh. :) Sometimes a girls gotta do, what a girls gotta do. Ha!
I have great news that my brother will be flying here from Germany Thursday evening. I will finally have some hands on support from my only sibling. My cousin is also coming here on Friday to stay for the weekend. My mom loves him like her own son. I hope they both get here in time. :(
I had mom to a pain clinic today to explore other meds or ways to relieve her pain from compression fractures. He was a great doc. Spent an hour talking with us and suggested many ways to help her. She shot down every one of his ideas.
Mom is now on almost day 6 of eating little to nothing. She insists that it is food that upsets her stomach, not the pain meds. The doctor and the nurse went over it with her several times that it is the meds and when taken without food, they can really mess up one's stomach. Mom said that they are wrong. I wanted to bang my head against the wall.
She did get a new prescription for celebrex for pain relief. We'll see how that goes, but if she's refusing to eat, I see no good outcome.
My husband and I have brought up hospice care several times but she refuses that as she says she is not dying. I talked with the nurses at mom's AL about it after the appointment. They said it's way past time for that and referred me to one they said they would chose for their own loved one. They visit seven days a week and boy, would that help me out. Mom doesn't understand that it is much help for the family as it is for her.
The nurse told her I can sign her up on my own as POA, but I know she would be furious with me.
When my brother gets here we will approach her as a united front. If she refuses, we plan to sign her up together. That way all of the blame isn't on me. He is full on board with that.
She desperately needs a hospital bed as her pressure sore is worsening. Sleeping in her recliner for weeks is not helping the situation. She is in too much pain to lie down in her sleep number bed. Flat or on her side does not work.
I realize she is in complete denial about dying, even when she wishes for it in her next breath. There is fear there, I know. From my experience with my dad on hospice, I know they have great support for the whole family, spiritually wise. We all need it. I don't want to place her without it being her choice. I'm hoping my brother will make a difference in that choice.
Another long post by Windy.....
If she will accept Hospice care, they will issue her one of those air beds, which will help those pressure sores heal up much quicker! Or you can try one of those cut our pillows, if she isn't already using one.
My Mom had a very bad pressure sore on her coxxyx, the last week of her life, but her whole body was shutting down, and she was "actively dying". But also unaware of it.
Sleeping in the recliner isn't helping matters, I'm sure.
If only the Dr told her she Must eat a little, before taking the pain meds, that might have helped!
You may just have to begin Hospice without her consent, just to relieve some of the pressures off of you and your family! It's great your brother is coming!
I hope that as a united from, she will see the right of things!
Probably, after having Hospice with you Dad, she is scared, simply from the implications of it being the begining of the end. And you can't blame her for being scared. Try to come up with a different approach. How much Better it would be, her having medical attention each day!
I'm sorry this is such a rough time for you!
Hopefully things improve, with brothers visit!
You take care! Time for a Brandy and a Cigarette! Lol! You can come join me on my porch! 😉
My mom's bone of contention with hospice is she didn't think they did anything for him. In her opinion they took him away. He had a horrible seizure due to brain cancer and my brother and I could no longer care for him at home.
She thinks that because she is an extreme narcissist that refused to visit him but once while he was at the hospice house for two weeks. He asked for her everyday and she refused to come. Talk about painful. She was awful to him in that respect and it was painful making up excuses for her for those two weeks. I hated lying to my dad when he was dying. I lost a lot of respect for her during that time.
In her mind, hospice was of no use because she was not present to see the kind care they gave for dad. There is no reference point. All that she thinks is they took my dad away from her.
That is a huge objection to overcome with someone that is of that mindset.
Look up 'stubborn' in the dictionary and you will see a picture of my mother. 'Unreasonable' also works. :)
SIL suggested being partial guardianship with the government. Guardianship! OMG, isn't that worse than POA in that it's permanent!?! I reminded her that I've been caregiving since my 20's , that's half my life. I never wanted children and look where I am. How I became seriously suicidal and sought therapy. I told her that I can't handle it. I'm close to cracking. And no one wants to be POA.
But she's right. Maybe it's time I start emailing my sibs in the mainland that since no one wants POA, it's time to seriously think of signing dad up to the NH. I'm so frustrated. I've been getting so much sharp chest pains lately. Sometimes, in the morning when I'm starting to change his pamper {1st thing I do every morning before our breakfast}, I get this sharp pain on my upper left shoulder. Sometimes, I can't move the arm, so I try changing him one armed. A few days ago, the pain went on my upper right shoulder. Whew! A minute there, with the left shoulder pains, I figured it's a stroke or heart attack warning sign. Now that it's also on the right shoulder, it's just stress.
Windy, is there any way to introduce hospice in a different light? I think there's another use for hospice. I forgot the words but I've read it here. Maybe you can try that angle first. And then gradually slide in hospice without calling it as 'hospice '. Similar to calling Depends as pull up undies and not as 'pamper' because they're not babies to wear pampers. Stubborn!
Just want you to know I appreciate all of you. ((hugs))
My mom's visiting doctor service started today. The doctor is an actual geriatrician. Hooray! A nurse who will see mom weekly was also along. How refreshing to have two women on board who actually understand the problems of the elderly. They were very kind and patient with her.
The first thing the doctor did is take her off of Celebrex before it even started. She said it's a bad medication for seniors. It can cause stomach bleeding and kidney and liver problems. She was appalled that a pain specialist would prescribe that for her. She moved her to a Tylenol/oxycodone combination. They took care of ordering the script, had it delivered and done! Amazing!
The doctor then brought up the issue of hospice with mom. She flat out refused, at first. We discussed the fact that she is increasingly weaker and is finding it almost impossible to wash herself and deal with the bowel incontinence. The hospice nurse would be there 6 days a week to help her and be her representative to the AL nursing staff if she feels the caregivers aren't doing a good job. The doctor, who is not affiliated with the hospice, but knows of the work of this nurse called her the rock star of hospice nurses.
Well, mom finally relented is on board! It feels like a miracle. I'm certainly not happy she needs to be on hospice, but I am relieved at the thought of not having to deal with this all alone.
I wish this feeling of relief for every member of this board that is struggling. Book, I think it is past time for dad to go to a NH. 20 some years of caregiving is too much for even superwoman. You DESERVE some relief yourself. I worry about you. ((hugs))
I was at dad's bank this afternoon. We need to renew dad's signature card because it expired. Yesterday, I explained dad's bedridden position and refusal to get on a wheelchair. I asked if I can take the document home and have him sign it. The teller said that he must come in. So I said that means it will be by ambulance. She nodded.
I came home and told SIL that we need to try to get dad on a wheelchair to go to the bank. She recommended asking if the bank will accept a notarized document if the notary did a home visit. If rejected, then she said it will have to be by ambulance (minimum $300 each way + mileage)
I went to the bank today and couldn't find the sign in sheet to see customer service. A teller called me over. I explained to him what I said yesterday to the other teller. And what SIL suggested. He immediately said no to the notary. He said that he didn't want to put my dad through too much trouble to get to the bank by ambulance in a stretcher .... He went to the branch manager for advice. He called the house, spoke to dad, asked him his SS number, etc... I was getting frustrated with oldest sis. I took the phone back, spoke to sis to write dad's SS number in LARGE numbers so that he can read it.... sadly, I couldn't remember what job my dad retired from and the name of the company. I couldn't remember my dad's mother's maiden name. I couldn't even remember my mom's maiden name!... I am sooooo forgetful. Sometimes, at work, I walk out of the restroom and out the building before I remember that it's not yet time to go home. I turn around and go back to the building and up the 3 flights of stairs....maybe I need to be tested for dementia....
I never buy realistic dolls in flea markets and garage sales. I don't know the owner's background .. if they touched the ouji board, etc... I like to buy them straight from the store, clean slate. I need to buy another doll for my bedroom to guard the door. I'm going to have fun looking for one with eye glasses. Maybe this one will be oriental since my other 2 dolls are Caucasian with light brown hair and brown skin with black hair.
Half hour later, went to the living room and she was gone.... what the????.... looked under the furniture, behind the sofas, looked in the dining room, the kitchen, and family room, even the powder room.... found her, whew, on the main landing of the basement stairs....
Guess she needed a potty break and didn't want to wait for me to help her, so she was going to try to walk down the basement stairs to the litter boxes. My first thought was, hope she didn't fall down the stairs and eventually climbed back up. She seemed ok.
Good grief, I never had any children, so I guess this is how it feels when one has a baby who is learning to walk and they slip out of sight for awhile.... YIKES.
freqflyer, Poor kitty. :( Don't you wish they could talk? It's hard to always gauge when they need water, are in pain, are hungry or need the 'facilities'.
It's so hard seeing our beloved fur babies get older. My little Jack Russell terrier just turned 13. He recently bounced back from a bad anal gland (Eww!) infection. I hope your dear kitty makes a complete recovery. They are precious.
Windy, I need for dad to sign in 4 different places, 2 per sheet. A few weeks ago, I tried to get him to sign a discontinue letter. It was really, really bad. We went through 4 pages of trying - and I gave up... I can't redo his signature signing on these 2 bank documents. I need to wait until I'm calm and not stressed out.
It's been windy here. My sinus allergies are having a field day. It includes a stuffy head but no drainage. My left nostril is all stuffed up, it's practically not working. And my right inner ear is screeching nonstop {beeeeeeeeeeeeeeeep}.
I tried reading a light short romance freebie ebook. I am soooooo not into romance novels. I think I'm at a stage in my life that reading romance 📚 feels like rubbing salt on an open wound. I definitely need to avoid downloading free romance 📚 . Unless it has humor.
I'm so tired. I forgot... oh, it was ABB who's also experiencing this. We're so exhausted mentally and physically, that even in our 😴 , our brains are working like crazy....
Dad has a weird soon-to-be bedsore. 2 nights ago, I didn't see anything when changing his pamper. Yesterday morning, I found a round mound sore (no broken skin) right where his poop comes to rest after escaping the inner body. That is a very bad place for a bedsore to pop open. No way I can tape gauze if the skin breaks and too close to be contaminated with feces. ... I told dad he needs to drink more water {rolling eyes}, turn on his sides {rolling eyes}, take in more Vit C and protein...... last night, the sore was completely gone. And now the large area of his former bedsore (tailbone area) has a round black spot under his skin. I touched the area. No lump. No bump. Nothing. Yet it's black. I've never seen this before... time to get up. Let's see if this spot is still there.
FF, my bro has 4 litter boxes in his house for his 2 cats, neither of which have problems getting around, just lazy? And will pee on any level of their multi level home if a box isn't more convenient.
Book, what about salve/ointment to protect against bedsore opening? Can you apply a wet dressing of A&D ointment or Vaseline or something like that? Bedsores aren't considered "skin breakdown" and more "pressure wound," right? I think they're both... but I'm not an expert. The gel pads they make for pressure relief, plus ointment to prevent to prevent skin breakdown...
You know more about bedsores than I do, book. My dad is (was! he's gained 50 lbs in past 2 years!! go caregiver me!!) so skinny, he never had any... that I saw. Love you, sis.
The sores on his backside need addressing by the visiting nurse, as bed sores can go bad Really fast! I'm sure you know all this, but I just wanted to remind you Sweetie!
As others have said, You are a Rockstar! But you need some more help, girl! And Yes, time to email your siblings, and set things straight, that you are Burnt Out, and do not want to be his POA, but someone else needs to step up, and assume that position!
I see no reason why a Bank Notary cannot come to the house, to witness him signing the signature cards, that's their job! At , that's how they do it here where I live! After all, the bank does use his money, and does make money off of him, having his account with their bank and all! Stand firm, and force that bank to come up with a viable solution, and not him having to travel in a cabulance at 600 dollars a pop, just to sign a form in their presence!
Ģlad the doll is working, and that your Dad is finding it a soothing source!
Hugs Love! You take care!
Hmmm... when mom's stomach tube was accidentally pulled out by the caregiver, I didn't have nerve to push it back in. I took her to the ER and got lectured by the ER doctor that I could have done it myself instead of bringing her to the ER.... I see a pattern. I can deal with lots of gross stuff but I seem to freeze if it has anything to do with putting anything inside a human body (gauze packed into the open wound, stomach tube back into her stomach hole.)
Since I have limited experience with bedsores, I am always open to suggestions. And because I'm queasy of bedsores, I do my best on prevention. Time to go now. Change his pamper (takes about 15 minutes), give him his last meal for the day.
My brother arrived from Germany on Thursday night. It was good to finally have him on board.
We saw mom at 9 Friday and had the hospice appointment at 10. We met with the chaplain, the social worker and the hospice nurse, all in mom's little 85 degree room with my brother and I and mom.
I'm glad I have a little perspective on it now, because that meeting left me feeling really unappreciated and like a piece of junk. She told them that I only visit once a week (!!???!!) and I'm pretty much a weak, worthless person. She only acquiesced to hospice because of me. I'm not strong enough to take care of her on my own.
Since I'm her health care proxy and DPOA, we went to a conference room at her AL to sign papers for hospice without mom's presence. She can't hold a pen anymore. I kind of had a mini-breakdown. I told them I have been doing this on my own for six years with the AL and no other support.
They were very understanding, especially the chaplain, of course! I told them about mom's control tendencies and how difficult it has been. They helped me to recover from mom's words about me.
While I was signing papers, the hospice nurse evaluated mom with my brother present. Her pain level was off the charts, which I knew. That is why I wanted hospice like two weeks ago! The hospice nurse told me they will find a way to help mom's pain.
My cousin and his girls arrived last night. I had a full house of people when I least needed it. Made a full meal for everyone and they stayed until 10 at night. Every fiber of my being wanted to kick everyone out. My mother is dying! I'm not with her at the moment, but I need some rest. It was SO hard.
My brother hasn't been here in almost 3 years so they all want to hang out with him. Today, at least it is my hubs, cousin and brother. No others.
We brought mom over to our house today to
be in a 'real place', not AL as she puts it. She actually ate a couple of teaspoons of cheese my brother brought from Germany.
Hospice has put her on morphine now, which was kind of shocking though it shouldn't be. She has it every four hours to get ahead of the pain.
It's real now. It's kind of hard for me to wrap my mind around it.
My mom is actively dying. She's under 80 pounds, now, just skin and bones.
My brother and cousin will be with her tomorrow to hold her hand. I am taking a mental health day with my husband. If she dies it was meant to be. She won't be alone.
Sorry to read about your mom, I am sure it must be very difficult. My mom, too, is on hospice care, has been since mid-October. She is declining quite rapidly now. But, taking her time.
She is in memory care with a 24 hour caregiver. I saw her in October, not November because they were quarantined with an intestinal bug. I will be moving back, two hours away instead of seven. So, will be able to see her more frequently. Very nice that your family is there for support. Let them do that, let them take care of you.
My best to you and your family.