Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
Ribbman, most of us here struggle with balance.. you have very legitimate concerns... others will come on and comment and share their own experiences... so maybe out of all of it, you will get what you need.
I am gathering that you mom has dementia, so her not wanting to be in placement is normal.... her firing all the help you got her is normal. She apparently is being well taken care of or you would not have relinquished some of your responsibility....with that being said, you deserve to have a life. If your marriage is starting to suffer, then you have yourself stretched way to thin, trying to please everyone... most caregivers will identify with that too....
Has your mom always been a complainer??? The reason I ask, is because this is one of the ways they keep us on the merry go round.... even if you brought her home with you, quit your job, divorced your wife, she would not be happy... am I right??
One suggestion is to get her to a Dr , have a good physical done... making sure she is healthy, no UTI(urinary tract infection), or any other health issues.... then you may talk with the Dr about medications....
What does the facility have to say about her behaviour... does she only do this when you are other family members are there, or is she hell on wheels all the time???
Will stop there , until we know more about her history, we could make suggestions until the cows come home and none of it may apply... so let us know how she has been in her life... and have you always been 'taking care' of things for her... sorry, we just need more info, not to be nosey, but to have the information to help you.... I hope we can help you .... just a little more info please. thanks
(2)
Report

Hi, thanks for responding! My mom was in an independent living community, and had a series of falls that resulted in ER visits, and her vitals began to destabilize because she wasn't eating right and taking her meds on time. I would call her multiple times during the day to remind her to eat and take meds, and make several trips (I live an hour away) weekly to make sure she had groceries, etc.

I tried hiring people to come in and help, but she fired them as quickly as I hired them. I set up grocery deliveries from a local market, and started up meals on wheels to help her with eating, but she terminated those as well.

Her condition worsened and the dementia increased to the point where entering assisted living was mandatory. It's been a little over six months now, and I'm letting the staff take over her daily care and coming to visit once a week or so. Believe me, managing her finances, health insurance, and her medical care takes up plenty of time and energy!

It would be unfair to say that she didn't resent my "management" of her life, but she hates the fact that I've turned over most of her daily care to the AL staff and complains ceaselessly, sometimes violently, about it. I guess I'm having trouble defining boundaries; I don't know how much personal involvement in her daily care is right, and how to handle her objections to living in the facility. My finances and relationship with my wife are starting to suffer, so I have to maintain a better balance between caregiving and living my life, and I struggle with that.
(2)
Report

Ribbman, if you could, please share a little more about what you were 'micromanaging' that has mom so upset..... that would help us to help you.... and welcome to AC..... if we can help, we will share our own experiences.... so hope we hear from you again.... hugs to your for just being a caregiver.. All caregivers need hugs...
(1)
Report

Well, I have to say it's a mixed bag. I began developing signs of caregiver burnout a few months back, so I've taken a step back from micromanaging mom's care and let the assisted living facility do what they do. Mom has not reacted well to this, and dumps on other family members that I am tired of her, she hates where she lives, etc. etc. The other family members so far have done nothing but talk, and have neither lifted a finger to help, nor even offered a single word of support. I met with my brother over the phone with a caregiver support person as a go between, and instead of opening up a dialogue with me, they continue to dump it on Mom, who then calls me up in near hysterics. I am trying to maintain my own emotional equilibrium about it, but it is hard. Any advice?
(1)
Report

Veronica, Ladee, Book, Send, Cwillie, Assandache, Glad, SherylBeth...thanks all for your hugs, comments, suggestions and prayers....I got a better night's sleep so that helps...Send, sometimes I think bathing is about all I do for myself these days...that tub full of hot water is about all that feels soothing these days....so I do that pretty often, and it does certainly help refresh your spirit too.

Just been thinking all morning of all the Thanksgivings long ago and knowing they are forever gone....I guess we can be thankful when we have the good memories though...that's a blessing in and of itself....and I know that...it's just hard to see Mama this way and remember all that right now...

Hospice has come and gone and I put in a definite word that we do NOT want a visit from the chaplain. I made sure they knew he did not come nor did he call to let me know he wasn't coming...they know that is probably the one major gripe I have with people in general...and I don't mean to hurt folks feelings...but dang it...I feel invisible enough and forgotten enough that I don't need or want folks who ought to know better being inconsiderate...

That's one thing if I ran a senior care center or Hospice provider service that I would make dang sure my staff knew...make SURE you do not make the caregivers feel ignored or neglected or slighted...There are a lot of things that are petty gripes and I know that as well...but to me, the common courtesy stuff should always be a priority...As it turns out, he got detained at someone's home who wanted him there...and that is absolutely fine...no problem....but at least let folks know you are unable to come...am I the only one who gets so aggravated by this? That was one thing if I ever had anything drilled into me it was being courteous to folks and if you're not going to be somewhere on time, let them know....

Oops, my power is running out so I guess I'm going to fire up the leaf blower and give it a go...I hope it is as powerful as the guy said it was....I am at least anxious to try it out...

Thank you all again and I guess after recharging my battery all I can do is what I am doing. I did have a talk with Mama this morning and again tried to let her know I am here for her as long as she needs me...I'm not going anywhere and we're going to make it together.....as I mentioned on another thread..that may be what she is planning as well.... have a good morning folks...thanks again...
(2)
Report

Book, great car news all the way around!

And if you had a hard time on a fast moving boat, do not ever ride a slow moving boat. I once took an auto ferry from Amsterdam to London somewhere thereabouts. It was an overcast day, ferrys usually move quite slowly, I have never been so sick in my life. Won't do that ever again!
(1)
Report

By the way, Veronica, I've ridden a fast moving boat when I went to Cairns, Australia. It was a tour to the Great Barrier Reef. I've been on a boat only twice in my whole life. In elementary, we had a field trip on the glass bottom boat. You sit and look down on the glass floor to see the ocean beneath. The 2nd one was in Hong Kong, a small boat tour around the basin looking at how these locals small boathomes. Houseboats? Really small, poor locals. The ocean water in the inlet was black. So, the boat to the Barrier Reef was fast. Waves flying at the sides, and me so seasick, I couldn't move at all. I have vertigo problem. Every time I tried to look up to see the view, I got so queasy. I spent the whole hour with my head down, reading my book. (Yes, when I go on tours, I make sure to bring at least 2 paperbacks with me.) I needed to pee so badly because the waves spray were wetting me, and I could not move at all. I tried to get away from sprays by standing up - and couldn't. So, there was this woman lying down getting a suntan with her eyes closed. I said, "Excuse me. I cannot stand up. Queasy. Can I crawl over you to get to the other side?" She said yes. Heck, I would have been embarrassed- normally. But, I was so miserable, forget about pride! I literally crawled right over her and crawled as much to the middle of the boat as I can. I think it was an hour ride. Sure felt like it! Learned my lesson. On the return ride, I went down inside the cabin where they had entertainment. Actually, I handled it much better inside the cabin than I did outside. The reason I stayed topside was because the boat guide said that for those who suffer with seasickness, it's best to stay topside. Ha! Now I know why she said that. It's better for the person to throw up on the deck than inside the cabin with all the other guests are!
(2)
Report

Glad, like I said NO helicopters. Too many crashes from the military helicopters, the Life Flight copters, and the tourist helicopters. Way too many crashes. Nope, not interested in riding one.

I got good news. Yesterday was my last day for the car rental. 6 days for car rental of the Corolla of $434.69. Because today was half day at work, I called the car rental on Monday to extend the rental for one more day - return on Wednesday. That will make it exactly 7 days (whereas yesterday would by 6 days.) No problem extending it. So, this morning, the auto shop called me and said he has good news. My car is ready! What? How? I thought it would take about 15 days for the ordered parts to come in? He said that they just got a new shipment and ... they actually have the coil packs for my car AND since they didn't have to 'special order' it, I don't have to pay the air freight cost of $162.78! So, the estimated car repair went from $951.88 to $789.10 (this includes their $89 diagnostic fee).

AND... I when I returned the car rental, which originally was $434.69 for 6 days... I paid $457.14 for 7 days. Whew! I was worried it would go over $500.00. It's the Collission Damage insurance that raises the price. If I rented the car without the CDW, I would have paid only $270.00 for 7 days....
(1)
Report

Hope I wish I could hug you both...

You've done good girl! You're Mom is proud.. All you can do is exactly what you are doing... Keep loving her...
(3)
Report

Hope, have you showered/bathed in the last 24 hours? That will help you.
(2)
Report

Hope, very difficult transition you are going through. You should get out and walk, even if just half way down the block and back. And the pup, will love it.

Ladee, I am with you, no underwater vessels for me. That old JFK sub story has stayed with me for many years. Never going there. But I would do a helicopter again. Once had a public affairs time (shoot what do you call it?) ride in the flight for life, that was fun, but very noisy. Though way too many helicopters have been crashing lately!
(3)
Report

Hope...i am not where you are yet, probably a few years to go before mom passes, maybe more. I also wish your mom could go 'home' ... its so senseless for them to linger in that state. I try not to ask why God doesnt take them??..i know theres no answer for us and does no good to wonder. Such a helpless situation and i wish we could all be there to give you comfort in person...please know that we are with you in our hearts and are thinking of you often. We all understand the pain and all have either been through it or will go through it at some point. Sending love and hugs to you.
(3)
Report

Really enjoying the references to kidnapping your friends.
Used to do this on a regular basis, for real. It was expensive because they never had time to grab their money on the way out.
Guideline: Do not let them know when you are coming.
(1)
Report

Facial massage, neck exercises with deep breathing in and out by mouth, and a few large gulps of water cleared the stuffed face. Now my right ear is definitely clogged. Running late this morning...
(0)
Report

Woke up with a terrible headache. Sinus allergy really bad. Whole face is painful. Right face is stuffed. Right Ear is ringing nonstop. ...
(0)
Report

Hope, I hated that waiting stage. Your poor mom, just lying there unhappy. You're so strong. I guess you have to be since it's just you there for your mom. Too bad the relatives don't really care enough to want to help you and mom. But show superficial interest..like the holiday comments. That's similar to mom's siblings who would drop by but didn't really do much... The minute my capable older sister from Colorado arrived, I dropped mom on her lap and fled the death watch. I'm so sorry that you and your mom are going through this. {{{Hugs}}}
(2)
Report

Maybe a nap Hope.... hyper vigilance is making you exhausted.... get some fresh air.... have on your favorite comfy clothes and a nap sounds in order.... nothing else you can do..... so get some rest.
(2)
Report

I am feeling so sad today I am almost physically ill. I also didn't get enough sleep last night so I know that is not helping matters....I started back on my BP meds and if I had to get up once I got up almost twice an hour...I've never had them do me that way..and I'm not one of those who can go right back to sleep. I start thinking of things and right now those things are not that pleasant. I have been feeling fairly strong..and I am not today..And I am angry that I am not but it is what it is...Thanks Veronica and Ladee...I appreciate the prayers...and concern.we need that now...especially now....Thank God things are ok with my brother and SIL..I sure hope that stays that way. And as crazy as this puppy makes me I'm pretty glad to have her...she seems to know I need her and she is not letting me out of her sight....sweet pup....maybe I just need to get out and breathe some sunshine and air...I'm afraid to leave her at all....but she seems to be sleeping and breathing ok..and I guess I"m telling myself that if I am meant to be here then I will be.....maybe I just need a nap...I don't know what I am saying....
(1)
Report

Book, I promise we would take care of you and teach you what to look out for.... not every city or town is fraught with gangs and robbers on every corner..... Like I said, you can visit everyone and decide where you want to live....

And Ms. V..... Nix the submarine... I want to be there to help 'kidnap' her, but no way are you getting me shut up in something underwater.... that would be a NOPE !!!

And remember, this is a 'kidnapping', she will have to go with us, we will medicate her until we get to the states, doesn't matter how we get her here..... we will let her settle down from sensory overload and then the party begins..... she will have rashes and pains and aches and her sinuses will be bothering her.... her back will hurt and we will introduce her to a 'spa day'..... That poor girl will be so 'taken care of', she will feel like we are smothering her..... !!!!
We are still in the planning stages Book, so hold on.... get your purses packed, we will figure out how to ship them when we get there !!! love ya Book, bigger than the sky !!!!
(1)
Report

Hope, everything you are feeling is normal for the situation... seeing the mom you know, that raised you, being here and not understanding why it is not her 'turn'.. don't you believe they wonder that too? What are you waiting on God, I am tired..
It is a very hard place for you to be..... and don't let the chaplan in if you don't want to be bothered.... the one Hospice had for E was so rude, always in a hurry, I finally told him not to come back.... if it doesn't bring you and your mom comfort right now... no matter who or what it is... then just say no....
You only have to do what you want and need to do right now.... If people don't understand, then good, you don't need unconscious people around right now...
Prayers for you and mom.... none of this is easy....and it's so sad... but know we are sad with you... you are not alone.... not in spirit..... sending you gentle hugs and shoulder to cry on....
(2)
Report

Oh Hope all I can do is send you hugs. I think thats what you need right now. There is no way you can change what is happening and the "waiting" is the hardest part. God is holding both you and Mama in his hands and together you will get through this. remember birth, sometimes it is quick and other times it is long and painful and the happiness you hoped for is not there.We had patient a newborn who died on day five. Her very young parents took her home and just loved her till she passed. her ashes are in an urn on the mantle shelf and her mother talks to her daily. She went on to have two more beautiful heathy children. You are such a beautiful person Hope that there will be happiness in your future too
(3)
Report

exactly cwillie.....I don't even know how I am supposed to feel right now other than just worn out and heartbroken. And today the chaplain told the nurse he "thought he'd pop in on us this afternoon"....I'm thinking that is not going to happen. For one thing...I hate pop in's period...but I am not in the frame of mind to sit here and feel like I am being quizzed about how I am feeling...do I know this is all a part of life...you are doing an honorable thing....yeah...actually I do already know all of that...and at this point it feels like beating me up every time I have to go through one of those quizzes...and sitting here right beside Mama talking about her passing...NO...I'm not doing it today...The only thing I have left at this point is choosing when and how people are going to come and go from this home. Keep Mama comfortable as best as I can and wait..and wait..and wait...but for some clueless person to think I am sitting here "enjoying the holidays???" holy sakes...where does that kind of thinking come from...It feels almost disrespectful for a bunch of folks to be hovering around her ...just barely hanging on, while everyone else but me pretends she is just having a blast...In my mind, she is getting ready to go home...quiet please...there is a difference in being cozy, peaceful and loved and having a blast and hooting and hollering....sometimes I think I am on the edge of senility...having gotten so close to the edge of passing and then be jerked back to this side...but like you said...do you keep giving them stuff to make them comfortable or just throw in the towel....

And I also don't really care for someone telling me they are coming today and then not hear one peep back from them...until they pop in...to me it's as though they are saying..it's ok, I know you are a captive audience so whenever I get there to check the box off by your name for the pre holiday "visit"...that's all that matters...
(1)
Report

Hope, your mama is so much worse off than mine, but I hear you loud and clear. It doesn't help that I literally hold the power of life and death in my hands... if I perhaps give in to her a little more often when she is reluctant to eat does that make me evil? We are stuck between a rock and hard place, they are neither living nor dead. We can't bring them back, and sometimes I wonder if I should be helping her to stay alive or actively working to speed her end :(
(3)
Report

I probably don't need to be on this thread but don't really feel welcome anywhere else other than here and the Dysfunction thread....so here goes....and it's not a whine, but an acceptance of the reality of what is happening...

This will be four years now for Mama and especially the last three, each holiday we figured would be the last. I honestly did not believe she would be here now. She has had such a horrid couple of months. And I'm not sure what keeps her holding on. This morning I was talking to her...she doesn't answer now, just has that sad, lost look on her face...no more smiles, the one yay last week was, I hoped, going to be her being back to a happy state..But this morning, I asked her was there anything else she needed...She nodded "no".....I asked her was she comfortable...she nodded "yes".....I asked her was she happy....she nodded "no"....that broke my heart...Totally bedfast now for two years and the third Christmas...it is killing me emotionally. I love my Mama with everything in me, but honestly, this is not living....she can't move, all she "eats" is ensure....she looks so sad. I don't want her to pass...I don't even know how to say what I am feeling...but I don't understand people wanting people to linger in this state. I don't. If she could be happy, that's one thing...Even I can see she is so unhappy. How on earth do you word something that doesn't sound positively horrible???

I want Mama to be happy. I want her to be home.....I have told her many many times, we are ok...we are family...I am grateful for having such a happy life and yall have been the most wonderful parents in the world and me and (brother) want you to be happy...so if you want to go home to Daddy, know that we are ok...we will miss you but we are ok...

I can't do anything else now but the day to day routine of just making sure she is comfortable and she feels loved and try to remember she will go when she is called...

I guess one reason it is hitting me harder this morning is my cousin, the one who has hinted at coming this Christmas again and I'm pretty sure was hinting to come yesterday that she was so happy that SIL came this weekend and that now I could get to enjoy such a wonderful Christmas....... WTH????? What is wonderful about seeing the one person whom you love more than life itself lying in almost a vegetative state. This is torture to me....God forgive me but it is. I have heard people say things like this all my life and I thought they were horrible hateful people...and now I find myself being one of them....I know I don't want to live like this...she is just here...and that's all you can say....sorry, didn't mean to interject dreariness...I am thankful Mama got ot see my SIL return...and for that moment in time we were together again, in this home..Mama's home...I may regret writing this post....it is not that I mind caring for her...I would care for her until the day I died if she could be happy...but there is little about her that bears even the slightest resemblance of happiness....
(4)
Report

Book how would you feel about a submarine or speedboat
(2)
Report

Book, I would get that record changed by calling the clinic. The wrong initial on there may very well confuse Medicare and anybody else looking at the record.

UTI, not too surprising. Wonder if you will see some of his behavior issues diminish when taken care of. They certainly prescribed an antibiotic, didn't they?
(0)
Report

My teacher niece and her father (my oldest bro) with oldest sis, all went to the clinic with dad. Niece told me that Grandpa was refusing to go to the clinic. When the ambulance people came in, he was shaking his head No. Then bro walked in, and asked him if he was ready to go the clinic. According to bro, dad just looked down. No shaking head, or anything. It was a good thing that bro was able to get off in time to be here. Otherwise, dad would not have gone.

I'm looking at his paperwork. They put the wrong name. My dad's middle initial is S, the paperwork shows P. The man with the P lives in Augusta, GA. Geez, we don't even live in the states. All of dad's bloodworks are under the P who had Medicare. I sure hope they don't bill all these to P.

He has urinary infection. Doctor recommends Vit.B compley once a day, Vit C 1000mg 2-3 times a day.
(0)
Report

LOL, Book! What date would work for you?
(1)
Report

Ladee, I would be scared to live in the states. I'm not street savvy. I will believe everyone, smile at people, strangers - when I shouldn't... Brother kept telling reminding us not to be too friendly. It will be a new learning curve...

But if you're going to kidnap me, NO helicopters! Too many helicopter crashes. And no private planes. There has been an increase of those crashes, too. Whoever comes to kidnap me, can we stop in Hawaii on the way back to the states? You all can enjoy the white sandy beach, I will do my window shopping....
(4)
Report

TryingtoCope - 24/7 caregiving IS sucking the life out of you. I've been there - when I was caregiving both bedridden parents and my 7 siblings didn't care to help. Not their problem. Have you tried checking for programs in your area to help give you respite (relief from caregiving?) Our island is very small. You can go around the island going 35mph in 2 hours. Even in our island, we do have at least 2 programs for caregivers. One program - they send caregivers 4 hours a week to relieve the home caregiver. What we've done is break it up into 1 hour stints in which they would sponge bath dad. Then the Other program, which we no longer in, would send a caregiver once a week - and I requested they shave and cut his hair. This program also gave us limited supplies like pampers, wipes, liners, gloves, etc.. As for the home caregiver, they would give like certificates for massage, or Kmart or Ross, etc... It really helps a lot. Can you check in your area?

Brandy, Johnjoe is right. That won't be the last time you will hear that comment. Might as well practice in front of the mirror on what you're going to say. In front of the mirror - so that you can look at the person in the eyes with boldness or firmness. The next time they make a comment like that, ask them if they are willing to provide you a roundtrip transportation there. and some other stuff....
(1)
Report

This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter