Grossed out and need to vent—I just caught Mom using my toothbrush to comb her hair!

Oh and Bobbie I mite have to hold ya to that "boat time" that sounds wonderful!

I want to say Thank you again everyone for your support! I have been reading so much here and learning so much it has saved me, I wish I had found n used this site much earlier but im here now and so thankful!!!
Yesterday Mom not only did her parrot but treasured greeting of "hows my pretty girl" She added out of the blue "that is the prettiest smile I have ever seen". This touched me deeply as I believe she felt and saw the relief of tension/despair in me. It was a sign to me that things are gonna be ok, AS LONG AS I DO THE BEST I CAN, whatever happens happens, we will be ok!! 2ndly tho I thought has my demeanor affected her negatively, oh gosh, have I impaired her in anyway with this burnout issue...im not gonna go there I take good care of her!!!
BUT............I also have read now several comments on people being mean and nasty to each other here or just someone being offensive. I HOPE I DIDN'T OR DON'T SPEW SOMETHING THATS HURTS ANYONES FEELINGS THAT IS NOT MY INTENTION, I AM JUST IN CRISIS AT THIS MOMENT, VENTING AND SPEWING 8.5YS OF PAIN N SUFFERING BOTTLED UP AND IT IS JUST FLOWING NOW, I CANT SEEM TO STOP IT AND DONT WANT TO IT FEEEELLLLSSS GGGOOOOODDDD BUT BEING SO EMOTIONAL, MY FILTER IS NOT ALWAYS A PART OF THAT. PLEASE FORGIVE ME IF I HAVE OR WILL OFFEND YOU!
Ms daizy...thank you for the advice. We have been thru many avenue's already sr services says they are giving us all they can, which is 3hrs respite 3 hrs bath aid, weekly. These are treasured and appreciated, but in my situation with absolutely no one to call on / in, don't help with the fears/needs. If I am sick I am screwed..I remember couple years ago having the flu so bad, I was puking non stop for nearly the whole day, literally crawled down the hall to change her, she didn't get any food till late afternoon, I just physically couldn't (by mid day I was praying for death, lol) but I digress. We are a hair over the income level apparently. I get close to nothing because in social service eyes I am choosing not be employed! they gave me $200 food card. There is a waiting list/raffle thing for state healthcare I am on the list now. We make too much to qualify for whatever else and not enough to do it on our own.
I have had some wonderful ideas provided to me here of different routes to explore so I will be checking them out, and I have found that sometimes the same routes with different contacts...sometimes these workers/helpers just don't have the zest or ??? to do their homework for you. I often have to educate my Sr Service case worker on issues of the elderly?

Thanks everyone and have a wonderful day!!!

Yup, to the two above....Honestly and I hope I don't offend anyone...even before mom n dads experiences, I so believe in "Kavorkian" or physician assisted suicide. By choice of course, whats right for each person and there family and beliefs. In my twenties I watched a dear friend whither away horribly with cancer and all the "proceedures" they did to her near the end to keep her going or comfortable not sure which. And just thought this is not right....If it is inevitable you are going to die (a slow painful death), let it be your (family) choice of how much you wanna to go thru. Actually I think it is legal here in Oregon, saw that somewhere once. Anyway sorry if I offended anyone!

I hear ya Jen! Death is just one of life's processes...

I talked to deef today she is OK, just really worn out and waiting for news on if she is gonna get a break or not.

you'll love this bobbie...FP IS one of those people who wants to be kept alive at any cost...doesn't it just figure?!


Western Medicine, expand the living-times well beyond the quality of being alive.

And who does it help? No one, prolongs sickness, failing, fading and the natural death process destroys the mind and body of loved ones trying to cope, often bankrupts people and to what end. They die any way, only at a much later date. Ah progress...

The religious angle is odd, considering all the hope of heaven and wanting to be with "The Lord" and all?...

Control, fear, fear of loss, inability to handle death and mourning? I don't know.

JuJu....it seems like that your mom should qualify for more help. Is there an Area of Aging and Disablities in your town? Ask the doctor or a social worker for the home health care. They should be able to help you with the paperwork and get something set up for you and your mom. They were very helpful to me. They came in and had a respite care giver she came in for 2 days a week for 3 hours. Plus we got supplies and equipement through them. State subsidized. So they will only go by your mom's income level. No assets are used for qualifications. I would definitely check and see if there are some programs out there you can access. I know the journey is hard..and sometimes it seems the traveling never ends. But I can tell you it does...I lost my little mom of 91 this January 9th. She had a fast progression and it was horrible. But she is at peace and so am I. I will pray for the days to get easier and for you to get relief. God Bless...(((hugs)))

I've never heard of a hospice nurse that wasn't great. They just help keep a patient comfortable at the end. There is a hospice house 200 miles from here. A friend took his wife there her last month. He could stay there with her, it really helped him out. But of course they won't help with long term care.
My golden eagles are back. Have a pair that shows up every spring, and nest in a cliff about half a mile from my house. They're huge. Love to watch them though.
Cuz, glad your doing better. Lawnmowers and horses, both dangerous.

Just want to add one more thing on a positive note...The Home HealthCare Agency was "polar opposite" of the Rehab facility....They were the sweetest well mannered compassionate thourough group of people and I cried tears of joy watching them work with us in our home. Especially the P/t intake therapist he absolutely glowed working with Mom...I complimented him on this and he just blushed and sed I just love the elderly, cant help it... I wanted to bottle him up n keep him her!!! Unfortunately he only got us set up so 2 visits but his counterpart was wonderful too...But Gary is one special individual!!!!

Hi everyone! Been a while and I think I am all caught up on your posts! Been very busy getting the house ready for both sons to move back home from college for the summer. Ugh. The older one has been in an apartment for a while not coming home each summer and his room was the catch all so it really meant rearranging a lot around the house! It all needed to be done anyway...I just haven't had the energy but had to get my arse in gear! So, now it is done. I was a hurting buckaroo tho-falling into bed every night exhausted...I am so out of shape. So now, I have a house full of boys and their ladies... They both got here on my bday Friday and then all the hoopla of Mother's Day so it was nice but exhausting! Gotta tell you, since the email to my bro that his wife had a fit about, I have not called or emailed any of the bros. I am done with trying to make them come see mom, help me or even call her. They are big boys... Well, everyone of them showed up yesterday to see mom! I almost fell over. The two worst didn't stay long...they are both on short leashes with their wives tugging all the time.... My God-it is their mother! But they don't care. Anyway...I will no longer keep them posted on mom-if they want to know, they have to contact me. Takes the stress off me! Screw them. Had a discussion with someone thinking about taking their mom in and I told her to prepare herself for disappointment in her siblings (among other things!).... Great if I am wrong-but not if I am right! Anyway....
Mom is doing well. She turns 87 tomorrow! We went to a surprise party last weekend-and mom went! The whole time we were there and she thought the party was for her! I kept reminding her who it was for and then just gave up. She was happy and got a lot of attention just being there so it was all good. She looked at me at one point and said-"I don't know half the people here!" I just laughed! My niece made her First Communion and mom made it to that party too! The better weather has really helped her desire to go out of the house! A pleasant surprise. She has been going to daycare. Oh-thanks for your responses about the visiting issue at her daycare. Sharynmarie-I agree that it is more due to the routine they have...but Jen-I agree that they shouldn't be able to say she can't have visitors-scary! I haven't discussed if people can pop in to check on her-as opposed to "visiting" which my sister was doing. Lildeb- My sis works at different schools around the city and she happened to be at a school over by the daycare so she popped in two different times...sat around and hung out. Meanwhile-I don't know why they didn't tell her themselves-I felt weird about that too. When I told her she said she isn't surprised. I asked why and she said that she had asked for a glass of water for mom....and then there was a lady who needed to pee and couldn't get out of her chair...and so my sis went and told the aides...She said they looked annoyed with her... I am not very happy about that but I am not sure what I can do. The other weird thing they did-one of the participants was playing the piano and all of a sudden the aide came in and turned the TV on and said, "let's watch TV now" and another participant said "No, we are enjoying the piano" and the aide turned the TV on and walked away...the lady playing the piano got up and sat in a recliner... Weird huh? I guess cause it was the end of the day maybe the employees were tired of the noise??? I don't know if anywhere is perfect....I know they don't neglect mom...So, I guess I am not going to take her out of there....I am just not sure what to say to them-if I say anything...
Bobbie-The wedding last Oct was for a niece and so is the one at the end of the month! I will put up a pic on my avatar after the wedding. Great to hear so much from you-you do write from the heart and don't mince words-I like that!
Cuz-glad you didn't get too hurt rolling your mower! I always worry my hubby will do that cause we have a nice hill....ugh. And we definitely don't bounce like we used to!
Cat-saving that dog was a beautiful thing to do! Poor little guy-but it sounds like he is now better off! That Dungeness Spit sounds beautiful! Worth the sore feet seeing those eagles!
Lildeb-hope your eye is healing! Nothing hurts worse than a scratch on the eye! My new glasses are proving to be difficult-progressive bifocals are hard to get used to. I am still not sure about them but try to keep them on all day and make myself get used to them! The frames are nice! haha
Flex-that poem is beautiful! Thank you for sharing. And for sharing your suicide attempt. I am so happy you are here helping us all through this. I am so thankful we all have each other who understand. The loneliness can be terrible and this site can really be a lifeline. Hugs to you!
Austin-so happy about your new relationship! Nice to hear a happy story in all this insanity! Enjoy!
BJ1-agree with antidepressants! Mom always said she wanted to sprinkle them in my dad's coffee every morning! Would have made a huge difference!
Welcome Juju! Vent away! Love that term "caregiver coma" I sooooo get that! This is my 9th year caring for mom. You hit many terms that I, and probably many, if not all of us feel! Imprisoned... Controlled by the day.... I too had many of the same problems with a nursing home mom was in for rehab for 3 weeks. I couldn't wait to get her home cause I knew I could take better care of her than they were! Talk about anger! I hope that they aren't all like that...but there are many. I will keep mom here as long as I can. I hope to see it through the end. But I do understand people who can't do this. I get that! There are days.... We all do the best we can and that is all anyone can ask.
Hello and welcome to Ppalmer and used2behappy...Funny how we can get used to the gross after a while! Keep coming back and venting!
Stormy-glad you are taking the time with Connor-he and hubby are your first priorities. Enjoy these tball days! They go by so quickly!
Well, I have written tooooo much! Glad to catch up with you all! Mame

juju~There some bad experiences with nh's from what others have posted on this site. It is not an easy decision whether to place a loved or keep them home. You have to do what is right for you and whatever that decision is, you will be supported here. I still have a lot of responsibility for my mom even though she is in assisted living. The woman who lives next door to mom has no health issues, she just didn't want the upkeep of a house anymore after her husband died. I am not going to say that I get to be a daughter again because I don't, the truth is mom doesn't realize I am her daughter so those days are gone. I would like to be more of a wife again to my husband. Hang in there, what you are doing is hard but you have support here. Hugs to you!!

And yes My body is screamin already and I have no health insurance so my healthcare is minimal if any! I ache and limp as a routine! my back,neck hand n arms are being worn down something is going on ....I am losing use of a thumb. So even if I wanted to keep doing this I don't think I can...ughhhh
I will survive!! BABY STEPS, is all I can tell myself at this point...

OH SORRY I know I am just going on n on but also want to say:
I knew I was blessed that mom is so sweet n loving and easy to care for in that respect but I never expected it to be that way. She was not a nice person to me as a youth, things were better once I moved out but still tension.
anyway...thru this site I see just how blessed I am...if my mom was awful like before or some of you all have to deal with I would not have taken this on, or been able to do it for very long if so...
this disease actually while stealing her memory also stole her emotional pain and gave me this wonderful time with her! I cry as I sit her and say I never even notice how beautiful her eyes were until those first days I had her in my house after dad died. either her pain stole the light or our relationship was so bad that we didn't look each other in the eye....idk waaaa waaa waaa im done this hurts
Have a good day y'all I plan to make the best of it! wish me luck!!

THanks again everyone...Love to you all and Bobbie thank you so much for sharing. I really appreciate it... don't have much time today but wanted to say by feeding tubes I guess I made a generalization...what I meant was when she progresses to the point where I cannot physically/emotionally handle the work and that would be the time she can no longer peak out her face and say her tried n true greeting to me of "hows my pretty girl" with those pretty blue/green eyes and cute toothless smile (dentures are thing of past for us), and is no longer able to give me the little assistance she can on routines! Honestly we never talked about these things the nitty gritty details and we still could but I don't think she would understand the gravity of what I am saying and would just tell me you do what you think is right. We only put together a AHCD in the beginning saying no extrodanary measures but I/we had no idea what was to come and today that questions me...what is "extrodaniary measures" What I do know is that I will not prolong her suffering if there is no quality of life!
And yes I totally agree the medical proffessionals will not give it to you strait. I guess that's kinda what sparked my despair....when home health came in and trained me on how to care for mom after the hip/shoulder break in Feb. Some of them did drop snippets of hints of what s to come and I would much rather be prepared than blindsided. I want and need to know the reality. that along with me just awaking from my coma. Hurled me at lite speed into reality and it kicked my butt! that being sed kinda leads into why I disdain the "facility" route...not that I have guilt that would be abandoning her there. I would much prefer to have it that way just go visit and be a daughter and living soul again. it is my fear and anger of the medical system.
1) My dads doctor was instrumental in his death, that anger is still with me today! I have had not had any time to process this or his death in general for that matter....I immediately had to take care of biz when he got sick and havnt had a break since!
2) She was in a facility when dad called me to let me FINALLY come help him....they wouldn't send her home with him cause he couldn't care for her anymore, apparently the story was that maybe he left her on the floor cuz he couldn't get her up for a days and she was in her own waste...idk if this is true?
Anyway in that facility while I was dealing with dad situation, she had been left unattended and fell out of a chair broke her coxsys sp? and someone there stole her wedding rings right off her finger, and her sweet nature she wudda just helped them out!
3) Her recent injuries we had her in 1 of the 2 facilities here. It was a nitemare. I nearly stroked out! They were awful mean bitter employees would not follow directions, unsafely and inproperly secured n transferred her to hospital for xrays, probably displacing her fracture, couldn't get her meds right, lying/covering up when caught/questioned and denying all responsibity for every incident..and she had bedsores within days of arriving. I mean this is what I come up with just off top of my head. I kept a notes and would be horrified if you all saw the complete list....all this as I am fighting to keep her there cause they were gonna send her home immediately. I fought and got 3 weeks there but by end of week 2 it was too much....I pulled her out the following Monday so I could get some mental rest! I swear I have not been that angry or frustrated with a collective group of people in my life, from the floor staff to the top!! It took all my strength not to wrap my hands round the director of nursing neck and the #1 guy was simply put an arrogant ass!
And someone told me to observe while I was there so I did, went over to LTC wing and just observed....it was not pretty, I could go into detail but be another page
as I write this I realize this also contributed to my despair...feeling there was not an option when it is time...I am gonna have to do this to the end, I wasn't ready for that reality!
anyway so that is my reasoning but I think once I can gain some order here and work thru all of these wonderful suggestions I am getting....I can find some other options!
Thank you all and bobbie yes I need want and appreciate the reality of her condition/future. I have to be prepared!!!
K I gotta go, dooty calls, lol!!!

I have never met anyone that said, "keep me alive at any cost, and do everything medically possible" and I worked in hospitals for over 20 years. I'm sure there is someone out there that does feel that way, but it is always been the family that won't let go, or the Dr telling them they should do everything. My husbands best friend had a heart attack, and asked my husband to take him out to the ranch, so he could die. Sam, took him to the hospital instead. It turned into the ordeal much like your father, Bobbi. Sam always regretted not doing as his friend asked. That had a lot to do with him making me promise to let him die at home. It was hard, there were times I really had to stop myself from calling an ambulance. But, in the end, I know I did what Sam wanted. We all gotta go sooner or later, all we can do is make the best of the time we have.
Sharyn, you know what is best for your mom. I don't get strangers trying to tell you they know something better. Sounds like the lady at the Dr's was senile as well. Stormy, you sure have been busy. Sorry to hear about your dad. It doesn't sound good.

Bobbie~I had a similar experience at the dr. last week with mom. An elderly woman in the waiting room overheard mom talking about how the pressure in her ears doesn't start until "they" give me the medicine. This pressure issue has been long standing with my mom...sinus and allergy. Anyway she starts telling my mom whatever you do don't take the medicine they give you because it will make you sleep all day, that's what they want so they don't have to do anything. I was getting so angry with her I wanted to tell her to shut up. She kept saying I would rather live under a bridge than live in one of those places. I told her I could quit my job to take care of her, lose my house, then we both could live under a bridge. I tried dropping hints that mom has dementia, she didn't pick up on it. If that ever happens again, I will ask the receptionist to sit us somewhere else than the waiting room. I know this kind woman meant well, but people really need to educate themselves on assisted living/memory care instead of the idea you are throwing your elderly away.

Sharynmarie,

We were writing at the same time! Great minds!

my condolences on the passing of your nephew.
Sorry about your poor auntie too. 12 years and counting. Guess I would have to look a long time to find a better example of what I am talking about.

Thanks for sharing that Sharynmarie. It's important to get that word out there and it's important also for people to understand that Assisted Living and Memory Care is not a cruel thing but a wonderful alternative so caregivers have a chance to take their rightful place in the cycle of life.

Love you gurl.

lovbob

Ya Stormy it is an individual choice to be sure! Every case is different with so many different dynamics involved.

I saw a documentary on dying, can't remember the name of it. There were a few different cases: cancer, heart disease and dementia being 3 I remember.

The dementia lady was in her 80's and had 3 daughters, one of whom was a raving religious nut (we all know they exsist and make it tough on the rest of us) who insisted on putting a feeding tube in her mom while the other 2 sisters weakly resisted. The religious lady wanted to hold out for a miracle and wanted to keep their mom alive to wait for it. Their mom was already unconscious, non communicative and bed ridden. Poor lady was just trying to die.
At the end of the documentary, after they had all their footage and had gone through post production, (some months later) that poor mom was still alive but didn't even know it and those sisters were still in the middle of intense grief with lives on hold.

If I had my wits about me and could discern the difference I would want to live with the help of modern tech but if I am just a body let me go home. Ain't no cure coming in the next 2 weeks so onward and upward.
All I'm saying.

Stormy, hope your dad isn't in a lot of pain with all that he has going on and we know that he has a good family to look after him the way you all do. I guess sometimes all we can do is wonder wtf to do next.

Every case is different and it's easy for me to say this and that because I am not there. I know that with my mom there was really no question that she was preparing to die and all I could do was make it as easy and loving as I could for her.

My dad was a different case. I wasn't there for the battle that led up to his passing but heard the stories. They kept shocking his heart back to life and I didn't know how painful that was for people. He would be so angry that he wasn't allowed to go that he would lash out.
When he went into his final coma (end stage renal failure, heart issues, liver, etc) he responded to us touching his chest by pulling up his arms. There was no brain activity whatsoever but the 'professionals' didn't correct us when we thought that he was going to 'come out of it'.
His response was only reflexive and not conscious and I only learned that by grilling a nurse.
I was the one who gave the word to stop the ventilator and even then the doctor became sh!tty with me when I refused a feeding tube.
"What if he doesn't die?"
Are you serious? He can't breathe on his own, has no brain activity and is just laying there. WTF they teach you in med school? This is not a science project this is my dad!

It took over 20 minutes for my father's heart to stop but it did and he was finally at peace.

Intrestingly enough, on the flight back to LA I sat next to a woman who wanted to talk. All I wanted to do was sit there but she wouldn't shut up. When she asked me what I was doing in the Philadelphia area I told her that my dad had just died and she asked for some detail and I told her that he was unresponsive with no brain activity for over 2 weeks, had end stage renal failure as well has congestive heart disease and liver failure so we finally let him go in peace.
She then begins to shout at me on the plane about how I made a terrible decision and how awful and then produces pictures of her husband, alive because of machines in a coma facility while she is flying out to visit her daughter. The poor man had been there for over a year.
'There could be a miracle!'
omg..... what an idiot. Then she wanted to pray with me. Perfect. Ew.

All we can do is make the best decisions for our circumstance and only we know what that is. I made mine and all I can do is say: hey, consider this while you gather your information. I know that what I have written is not easy to take in but you guys can go anywhere and listen to bullsh!t but you're not going to hear it from me.

Off to the supply house to get some boat stuff!

Have as good a day as you all can.

lovbob

Bobbie~you are right, dementia is progressive, I watched my dad go from being a vibrant active man to a man who could not walk or talk anymore. I have an aunt with dementia, she has been on a feeding tube for 12 years now, she is unresponsive. My mom asks about her all the time, I don't tell her the truth anymore because it isn't worth seeing the horror on her face. Both my parents have made it clear they wouldn't want a feeding tube and dad passed with only comfort care. We will do the same for mom. Mom is adjusting to AL. My time with her is a gift as you said and by having her in AL, I am able to spend more quality time with her. I was with her all day Saturday, we had lunch together and just out in her apartment while I did all her laundry. Mom was never one to sit and socialize with us when we would go to her house for any occasion and she won't do even now. I asked her on Saturday, "Mom, what are you doing?" She said, "I am organizing." I realized that all these years my mom was unable to sit and relax with her family because she needed to organize things, now it gives her a sense of purpose to keep organizing and reorganizing. It's what she does and this is why she can't find things because she is always moving them and forgets where she put it. Somedays she thinks I am my sister, somedays she thinks I am her sister (my aunt with the feeding tube), I don't care who she thinks I am because I know when she sees me, she know I am someone important to her, it shows in her eyes. It is still very hard for me emotionally dealing with her dementia...maybe because after dad having it, I know how it will progress, maybe it's because she is my last living parent. When I go to her house and she is not there, all the memories of growing up there flood my mind. I have peace of mind that she is safe in AL, she enjoys the attention she gets because of her dog, and my time with her is not rushed like it was when she was home.

You all remember my brother's step son I posted about, he passed away last Thursday with all his loved ones surrounding him. He is now at peace and pain free. He was only 37 but 8 years of battling cancer was very hard on the family and while I know they are all hurting, I am sure they also feel a relief that he is not in pain.

Have a good week all, hope you find some time to relax and I hope Deef is ok. Hugs to all

Thanks Bobbie- I too wonder about the feeding tube, cause my dad has one. He got his probably about 2 years ago due to swallowing problems from his trach. It makes me wonder if and when his dilation stops working on his throat if the feeding tube will prolong his life of misery. I don't remember if I told ya'll but on one of dads ct scans I found that he has a nodule in one of his lungs and it has grown over the last year. It went from being a 7 mm to 1.1 cm as of 4 months ago. He will have another ct scan next month. I have not told my sis about the lung nodule cause I don't want her to freak out. And the drs have not said anything to us about it either. If I didn't pick up dads scan reports I would not know anything about it. And dad coughed up blood about 2 weeks ago. Sis did not tell the dr when it was time for his appt. cause she figured that it was coming from him not using his humidifier. Found out too that he has stage 2 kidney disease and that something is going on with his liver cause his levels on the liver are high. And his stomach on the right side looks a little swollen to me at times, the same side the liver is on. Well I have to go into work so I will check back later. love and hugs stormy.

Good Early Morning Crew,

The sun is coming up on still water.

Stormy! Great to hear from you and so happy you had a good Mom's Day. Sounds like Connor is having a good time in Tball and glad your sis is in the game with your dad.

used2behapi hope you keep writing/venting it out.

lildeb! wow on the eye! got an infection here almost a year ago. Wasn't funny. Glad you are in good hands.

Jen! Still haven't heard from Deef and I am really worried. Have you tried calling?
How are you doing?

Cattails! how is the Alzheimer's event coming?

Austin! so what did you and your squeeze do over the weekend? Hopefully it involved 'squeezing'.

ppalmer! thanks for dropping by here on the Grossed thread and I hope that you are writing/venting somewhere at least and do hope that you will check in again and let us know how you are getting on.

Flex! How is it going and thank you so much for telling Juju about your suicide attempt. I think so many of us don't realize that what we are doing is impossible without help.
Flex I am so happy that you are still here.

Meanwhile! how is that foot? How are the horses? How is Indio?
(I am a romantic at heart... most of my problems comes from that.... *sigh*)

Juju! Noticed that you hit the 26,900th post the other day and that means you got 'boat time'. Just a little goofy thing we started awhile back to mark the passage of posts and time here on the Grossed thread.

I have a boat and if you ever make it to where the boat might be.... you get some boat time and boat drinks with little umbrellas in them haha! No kidding! Could be just pineapple juice but so what! Boat Time!

I think that the person you are thinking of in the middle of the Pacific is bookworm or maybe her screen name is bookluvr now. Not sure. She is amazing in her strength with what she has had to deal with and what she is still dealing with. She is a big favorite of many of us here and someone who has a heart as big as that ocean she lives in the middle of.

OK, to address the institutionalization of mamas in general and my mom specifically:

I sure didn't want to do it and didn't do it except for 10 weeks of respite care because I was dying. I was on my own for mom's care and it was killing me, that simple. Blood pressure was off the charts and my body hurt like hell from lifting her, not to mention the stress of wondering when each breath would be her last.

(btw, Deef has serious rotator cuff and back issues from lifting her mom; so many caregivers end up destroying their bodies because of the physicality of this job.)

After the respite care, I moved a 24/7 caregiver into the house and that is the only way I could handle the load. When mom reached end stage Dementia she didn't leave her bed and there was no way I was going to put a feeding tube in her. We stayed with her and fed her baby food so her stomach wouldn't hurt. If it took an hour, it took an hour.
Swallowing in end stage is a huge issue because of the chance of aspiration. It has to be dealt with very carefully and we were able to do that.

Feeding tubes will keep the body alive for months and months and, in my opinion, and it's only my opinion, that is what you don't want to do to someone no matter how much you love them and don't want them to go. Believe me you are not doing them a favor.

Dementia/Alzheimer's is progressive and there is no way out except death and that death will come and free you both. It is a blessing when it comes even though it hurts beyond any hurt I have ever experienced.

Facing the reality that your mom is not going to get better and that you are not going to get her back is one of the first steps towards dealing rationally with this insanely devastating disease.

The other part of the equation is that the time that you have now is a gift that you treasure just like you are doing by going out to churches or whatever you guys do that works for you.

Not all caregivers have charges that are sweet and greet them with a kind word. You have that and that is gold. My mom was mean as a snake but as she entered late mid stage she mellowed and was kind to me most of the time. She still had her moments but that was the Dementia talking, or at least that's what I told myself so I could get through the day.

After mom's death it took me a long time to heal and I am still not all the way back. I continue to post on this thread because of the amazing support I recieved from other caregivers and because of folks like you Juju, who are facing the unthinkable.

What I have noticed is that no one will tell the truth of what is to come. In my case no 'professional' would tell me what was going to happen to my mom and by proximity me and it left me woefully unprepared.

No professional told me that if I interfered with nature, I could be maintaining a living corpse for months, perhaps years. I had to figure that out on my own.
Of course the 'doctors' recommended feeding tubes and hospitalization because that's how they make a living but by then I had educated myself and my mom was able to pass in her own bed with no extrordinary measures because I wouldn't allow them.
She couldn't walk, or use the bathroom or eat on her own. She was hallucinating and suffering. It was time for her to go. Harsh but true.

The hardest thing I ever did was get up on the bed with her and hold her hands and tell her I love her and that Daddy was waiting for her.
I watched the light go out of her beautiful blue eyes and as I sit here writing to you I am crying again even after she is 3 years gone.
I cry for the memory of my mom but I do not cry because of guilt for I know I did my best and provided my mom with the best. I did not keep her alive so she could suffer another day.
The fact that I am starting my day crying is another reason I don't write this deeply that much anymore but when I hear 'feeding tubes.....'

Everybody's Dementia is different but there is one thing that is the same:
It is Progressive. There is no cure and the Demented body is a cruel prison in which to be trapped. That is truth.

ok, keep venting and whatever you choose to do we will be here for you but in order to make a choice you will want to hear all sides.
Mine is but one.

Off to make some coffee and get to working on a boat.
We redid the shore power cord yesterday and let me tell you that I learned another good use for dishwashing liquid.
We had to pull this HUGE 50 Amp power cord through a small chase so I am under the helm and the boat angel hands me the bottle of Dawn and I said.... Hey There...
He got on the other side and I dripped Dawn on the cord and it slipped in with him fishing and pulling and me pushing like shoving people on a subway in Tokyo.

Writing a book:
So you think you want a boat...

haha.

Love all you guys way more than you know.

lovbob

Juju~My heart goes out to you, I am happy you are starting to feel better. This is a great thread to vent and get support. So happy you found it.

oops hit wrong button! I laffed so dang hard, guess I needed it, or what else can ya do ...Im all cried out for the time being!

I took mom to the 2nd church today it was very small baptist, the people were nice, we felt comfortable. however into the sermon I was bothered by some statements by pastor..they seemed awfully prejudicial. I think I will go back to last weeks or try another we went to many many years ago! Then I took her out to breakfast. I had to feed her in the restaurant or we wudda been there all day and got some looks but we had a nice time!
Have to close this week off with a good laugh and boy do I need it!!! So to get back on topic as I am putting her to bed tonite I got my face in her ass cleaning/ n changing diapers....and I hear pffffffffffffff.......she gassed me!

Hey everyone- I wanted to say that I hope all of you wonderful ladies out there had a great mother's day. Mine was wonderful, I got to spend it with my two favorite men (My husband and Connor). I am sorry I haven't been here lately. Its been a busy time. Connor is in tball and having practices and games alot during the week. And he has been having some trouble in school with learning his long and short vowels, so I have been having to try to help him with that. And I have been helping out at the store more because my neice quit working up there. Leaving sis short of help up there. Dad is doing about the same I think. He goes for a ct scan June 7th and then a drs appt the week after that to discuss the results. I hope everyone is doing alright. And welcome to the newcomers!!! This is a wonderful site with lots of help! Well, I know this is late but "Happy Mother's Day" to all of you!! Much love and hugs to all. Stormy.

Bobbie,,,,Thanks and just to be clear (I am not being argumentive) and without getting into another long complicated story right now, which include horrible experiences with facilities in the past, I am strongly against institutionalizing my mom...it would only be a "last resort" at this point. until feeding tubes and other stuff like that come into play I would not even consider it as a permanent solution but maybe for a respite break.

Thanks again everyone! 1Luv!!

Hey there used2behapi!

Wow your user name says it all and we get you here.
I never thought I would do the things I did for mom but I did.
And it was gross! It just is.
Mom would get me good now and again and laugh her butt off.

Welcome to the home of Vent and Live! Hope you stick around.

lovbob

JuJubean, remember please, you are not alone! We are her for you! 24/7

Jujubean,

glad you are beginning to decompress enough to move forward.

Hopefully you can begin the search for a place for your mom. That's what it's going to take unless you can move someone into the house with you guys so you can keep going but not get killed doing it.

Let us know what you think and I know that there's a few different solutions. Maybe some more caregivers will post with their choices. My personal choice is placement. You get to be a daughter again and not a nurse and she gets to be your mom and not your patient.

Good luck and we're all here for you.

We only change when it hurts more to stay the same.
Dunno who said that but it's twoo.

lovbob

Oops, I meant to say "than a toothbrush"

Please, everyone. Don't get grossed out! Not yet! I personally have to do things to and for my Mother daily that even her Doctors don't want to do! I guess that's why I do it? Don't ask, it far worse that a tooth brush, trust me!