
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
Glad - how was Teepa Snow?
Sharyn - that is funny about your daughter. When I was late in pregnancy with Gordie, I was BIG! In a store one day, a lady looked at me sympathetically and told me that she had had twins. I answered rather shortly that I wasn't having twins. At the time I didn't see the humor.
Christine - marg has a point about a serious talk with your hub.
Marg - the first psychiatrist said they would inject the drug if they had to. That hasn't happened. If it had happened mother could probably gone back to her ALF. Thx for the kudos.
ReneaP1960 - hard for anyone who has not walked in or shoes to understand. Your phrase "difficult to visit difficult to understand" struck a chord. That is where I am at. Fortunately the psychiatrists and the social worker accept where I am at. My sister doesn't, but that is another story. We certainly don't need to be judged. ((((((hugs))))) We understand.
Alison, looloo, cm - the email and info question needs to be another post for me - I am in a situation right now. Will share in a later post.
Austin - you must have been very good at your job, and I bet the oldsters loved you
Alison - sorry today's visit didn't turn out as you hoped. Ii would have thought that your dad's behaviour warranted an evaluation. Obviously, he cannot live completely independently and needs some help. I am a bit puzzled by the PCP.
More later on the sharing of information. I am getting grilled by my niece, and spoken to rather sarcastically. I don't respond well to that, as she will find out.
You do seem to have your hands full, like most of us here.
My mother's family has abandoned her purposely, so that she will
see there's "nothing up here for you. Your brothers don't need you" This came from my cousin- the same one who'd taken my mother to have a new will drawn last July-without a word to the rest of the family. He had put himself & his family in the will & had my mom sign for him as a beneficiary on a substantial brokerage account.
Last Dec. when I was in town for the holidays, I got hit with ”help me, they're trying to put me in a home. I need a lawyer” This was cousin afore mentioned, another cousin/business owner & his wife. They had told me they'd take my mother to have will rescinded & put ending back to the way her will was writen in 06. This had not been done yet, but they took her to a lawyer who was borrowing an office in an investment firm, where a son of these cousin's works! My cousin's wife told me no investors would be there when she went with them. They even assured me of this on way home from attorney. Mom hadn't signed the attorney, as she didn't like him. They underestimated her- she told me what they failed to mention: 3 or 4 strange men in suits came in & sat with her at the table- had the family leave the room. My cousin had plans & didn't think I'd find out about them... He underestimated me as well.
I have been working diligently on my mother's affairs. We've discussed possible future alternatives with an elder care attorney I found. She did not have a trust in place, nor any Medigap.
That was going on between Oct & Dec of last year. The people who were "so concerned about her welfare “ were networking with the companies they took her to- one of which was a very high end adult apt center. Mom didn't like it or hear about it any more, much less mobs in. Now I see that although the majority of the family lives within 30 min from my mother, none are even calling to see how she is, much less stopping by. Occasionally they invite her to showers, weddings, showers, birthdays. My cousin even took the time to call all the family, including my daughter, to tell them she did not have a brain tumor- it was just dementia!" He went to the surgeons office with me & Mom, heard what doc said, & saw the same MRI. This same cousin offered to get my mother to a neologist so she could far medicine for the dementia. When we were all moving her to a downstairs apt he showed me the letter from this doc, which said she feels it's Alzheimer's & she should not be living alone... Was a danger to herself (No explanation of this). She is the Dr who called to tell me that Mom had the brain tumor.
Sound like there's allot of manipulation going on here doesn't it?
My cousin says he doesn't want responsibility of my mom. Last year he kept telling everyone how close they've always been--& that he's been "taking care of my mother". That's not true as Mom still takes care of herself. She says she wants no part of this nephew-that he's been trying to put her away for years". It feels like he wants control, to take over, have power, & do what he wants with her money. Many times over the last year he's said ”i can't do anything for her without power of attorney " She wants me to do this as I'm her only child. I don't talk about it with my cousin- I notice he always brings it up.
I've set up a follow up visit with a social worker who visited my mother in Jan. She couldn't find any needs or problems, so closed the case. I wonder if Mom really has Alzheimer's. Her vision & eyeglass presciption changes frequently; ie, double vision, blurry vision, watery eyes. She has visual/spatial problems, Her gait looks a bit like Parkinson's. She complains of severe fatigue. The neologist only saw her once. Maybe this is dementia plus another undiagnosed condition.⁉
I think it might be too late for the POA, as FIL is not competent. So hubs is talking to a lawyer about guardianship or something. But there is a possibility that MIL is still competent so might be able to be signing things. The legal part is too much for my poor brain to handle right now. You're right though, I need help.
Add to this that Charles and I are planning to get married, after 13 years of shacking up, haha, although that has been derailed a little with all this other stuff going on.
It was my FIL that fell outside and couldn't get up. He was having a lot of trouble with getting up even out of a chair or his bed. Since I have been giving him the vitamin B mix he seems to be doing a little better with that. Still sundowning, and doesn't know who anyone is most of the time, except for his wife and his dog. I feel like he is declining really fast. Charles took him to the doctor last week, and the doctor prescribed an antipsychotic for the aggressive episodes. He is out of one of the drugs he has been taking for decades, and the new doctor would not refill the prescription. I was worried about withdrawals from it, it is some kind of anti anxiety thing that is supposed to help him not have nightmares. The more I listen to him and hear him get so distraught and crying about being in the Navy in the war, the more I think he has PTSD and never has been treated for it. I am not a doctor, but I don't feel that he was getting much care at the VA clinic he was going to. Of course, no one was probably telling the doctor about his problems, and he has had dementia for a few years now, apparently. I have been keeping a diary and gave it all to the new doctor. I am hopeful that he will get more care, the other thing the doctor prescribed was a visiting nurse. MIL gets a nurse and has had a Physical Therapist the past three weeks. So that seems to have made a difference, even if it only in that she feels that someone is looking after her. This week a niece has been visiting, so she took MIL out for lunch and a pedicure today. MIL was so thrilled to have all this attention showered on her.
Ah well, things will even out. Charles and I went on a drive over to the nursing home over the weekend, just to look at the outside, not ready for a tour yet. One thing I am fretting about is if we end up moving him there soon that it will shorten his life. It is his greatest fear, to be put in a nursing home. Heck, I am ready to sign up for one myself right now. But somehow that is terrifying to FIL. So when the time comes that Charles and I can't handle the care of him anymore at least we have a place in mind, and there are beds available. So I am breathing easier for that.
I am working hard on making some space for myself. I have a bad tendency to give more than I have...so I have been making some time alone at night, sending the old ones to bed early and spending some quiet time reading. I have not been in my workroom in a month, another thing that I put aside for this situation. I make dolls honoring the goddesses of ancient cultures. I love doing that, but lately feel too exhausted to create. I know it will settle down, one way or the other. And I can do this for a limited time.
Thank you so much for listening to me ramble on, and for being here, sharing your stories and your advice. Hugs to everyone, we are all doing an amazing job.
Christine
One thing I found especially interesting was the reason those with dementia walk so numched over is what happens with peripheral vision as we age. By the time you are in later stages of Alzheimer's their eyes see as if they were holding binoculars around their eyes. No wonder Mom screams sometimes when I put her hearing aids in. She does not have any idea I am there! LOL. I suppose those could also be the case when changing their diapers. If they do not see you in their center of vision they may think they are being attacked. Their sight even if they can see well, is severely limited.
She said she just finished up some presentations in Canada, and that Wisconsin is next on the list. The fee to attend for a family caregiver was only $10.00. A bargain and learned so much. Will post more about it tomorrow when looking at my notes.
Alison~I send my long lost brother and my sister's daughters a group email. I highlight all the positives and only say mom/grandma is fine physically. I tell them what my hubs and I are doing, about our children then I end with if you have any questions about mom/grandma's health contact me, I will be more than happy to answer your questions. No one responds. In my case, I send this out in December, LOL!!!
Veronioca~Mystery solved and you have not taken a major decline down the dementia road, LOL!!
Joan~I know you have your hands full with planning a wedding (happy planning) and then planning how to deal with your sister, organizing the move for your mother, dealing with dr's and SW (not so happy planning). Take care of you and I know you will find something good to do for yourself..as you are so good about that.
Thank you for all the responses regarding my sister gifting in mom name along with what she can afford to gift. I agree that it is not necessary to keep "up appearances" for whatever the reasons because none of us...sibs, grands, or great grands expect a gift from her.
I am off tomorrow for 3 days, YAY!!! Tomorrow I will work in the house and make a big dinner w/left overs for Thursday. Visit mom and take her out, and on Friday, I told hubby we can go out for dinner and handed him our anniversary gift from his father back in April, LOL!! Too much going on at that time with planning the genders reveal.
More decluttering tomorow and Thursday...I should just rent a truck to haul it all away at one time, LOL!!
Have a good night everyone!!
By the way, my siblings don’t respond when I send email updates about dad. I still send it. Because later down the line, they cannot accuse me of keeping things a secret or that no one told them about it. I have my email to prove that I did email them. My baby brother has this habit of saying “I didn’t know… I didn’t know..” I told him that I emailed to him. Obviously he wasn’t reading it. I feel no guilt since I did tell them.
Glad - I'm so glad and full of envy that you were able to see Teepa live. Wow! I mean just her YouTube videos are so powerful. I can just imagine what she's like in person. For me, scary because she would go up to you and just choose you to be an "example" of her lessons. Did they also videotape her talk and gave you the option to purchase it? That would be soooo neat!
Sharyn, I hope you enjoy your 3 days leave. You need it with all that's been going on.
Broken1 - depends on what you and hubby want. Do you still want to continue to caregive grandma? Is she living in your own home? Your husband/family comes first. If Grandma is forcing you to choose, then choose. Depending how able she is - there is the option of Independent living where she lives with others of her age. See the right side, just below "My Account" is a Blue Box "Find Housing & Care". Maybe you can scroll around and see what options would best fit your grandma. There is no guilt for Not being able to no longer provide care for her. If that is her home and she has Not been declared incompetent, then you can set up services for someone to visit her weekly to make sure she's okay. The thing is, the government will not step in if grandma is doing fine. They will only step in if she gets hurt. Then they will find a place for her - nursing home, etc... Perhaps you can give us more information on how she is and her health situation?
sarah48 commented 6/10/2014 at 10:27 pm
Dearest one,
I do sincerely apologize for my intrusion of your privacy here in this wonderful site, I have a serious concern with which I believe you might be of help and for this reason, I cannot but reach out to someone. My name is,
Mrs Sarah Duke. A Nationality of Finland
I am married to late Mr. David Duke, who worked with the United Nation Office in Iraq for 18 years before he was killed in a Car bomb accident along side with my daughter Helen when they went there for a visit.
We were a dedicated Christians (Catholic) and decided to serve mankind to the best of our ability. Since his death, I have lived with ! the memories, fighting effortlessly to live a normal life but all to no avail.
I suffered mentally and psychologically and shortly was diagnosed of Cancer. I lived with the scourge praying earnestly for divine intervention. Just 4 days ago, the doctor informed me that I have just about two weeks more to live. I was not shocked. I accepted the news in good fate.
My dear beloved, it is in this regard that I write to you, having sourced you after fervent prayers. Before my husband died, he deposited a sum of $8.3Million (Eight Million, Three Hundred Thousand United States Dollars) with a Bank.
I alone have the deposit details and they will release the deposit to no one unless I instruct them to do so. They are simply awaiting instructions to release the deposit to any party that I may direct. This is the situation. I will simply nominate you as the next o! f kin and have them release the deposit to you.
I have wholeheartedly decided to donate the entirety of this fund to any devoted believer or organization and to achieve this, I need an individual that will utilize this funds adherently for these purposes:
1: For the sick, less-privileged and destitute.
2: For the Widows and the motherless babies e.t.c.
3: orphanages, Research centers and widows propagating.
4. To adopt children and give them good future
These are the wishes of a dying woman. They are the desires of my heart, hence my decision as I do not have a child to take over my inheritance. Please, understand that I am not doing this because of fear of death as I am certain where my place already is.
When I receive your response, I will direct you at once to an attorney who shall assist you with the deposit portfolio transfer of ownership procedures.
I wish to state here that! my communication with you will seize once I have given you the attorney contact and of
course a letter of authority mandating the bank to entertain your claims of right of ownership.
All I need from you is Truthfulness, Honesty and Sincerity assuring me that you can in all honesty and obedience utilize the funds for the purpose with which it is meant.
In any a case, a quick response from you will be highly appreciated as I am already on a count-down and may not have ample time to finalize the procedures. Any delay in response may compel me to source for other measures or perhaps choose the alternative which I will not be happy to. Please, do not see this as a strange possibility or an unbelievable Opportunity to make wealth, rather see this as a rare chance to assist the less privileged in truth and in spirit with a substance.
I insist that you reply me via this address.
I await your immediate response.
Thank You and Bless You richly!
Mrs Sarah D.
Thanks for the heads up x
FYI, they also hack into your email, then send a HELP, I'm in the Hospital and my wallet/purse was stolen, and I don't have money to pay for my medical expenses. Because they hacked into your email, you might think that the email is legitimate. Do not believe it! We got several of those from our clients. Now, we email them and tell them that their email address is compromised and forward to them a copy of their Help I need to pay for the Hospital letter.
Re: The Troll Letter,
"Oh brother!"
Margeaux
Your brothers show no genuine interest, nor concern for your dad's health.
The older brothe sounds like a complete bully, and the other one sounds very disconnected. Certainly updating them as the informational process about dad's health concerns, I understand, and let's say if it was decided he would have the Prostectomy, I'm sure they'd be informed. When the doctors told my sister mom would need to have Gallbladder surgery, she called the siblings up. We met to make a decision because of mother's advanced age. Many times I don't get all the details, nor am I told about the times mom has been to the ER. I find out after the fact, because my sister is the controller, she's not like you willing to share all the info. Sure, this has made me very mad, because it points to a history of behavior by my sister. But, I've decided, as long as I know when it's getting real serious, at least I'm told. It takes too much energy on my part to react by getting hurt,etc. So I've let it go, and I figure.....
"My sister needs to control it so much, so let it be." There was a time, this kind of stuff would hurt my feelings. I just can't waste my emotions on this anymore!!
The fact that you also added the last paragraph, maybe you should have drafted it, but not hit submit. HAAH! What you need to zero in on here is, "Am I sending them the update," as informational, and that's that, no need for a reply. "Am I sending the update w/the added paragraph, because I'm expecting them to show gratitude, or consideration towards me for everything that I'm doing for dad. An abusive nor disconnected person is going to give you that. Try not to waste your good, productive energy focusing on that. I think it's a matter of possibly changing the way you analyze it, and not allowing it to bother you.
Yes.....easier said than done. But it's liberating!
Hugs,
Much Love & Light! Margeaux
A lot of people don't understand about dementia. I have done a lot of research, and am better at handling it now. But not everyone in the family gets it. Even Charles was screaming back and arguing with his late stage dementia father before he understood that it was futile. And you have to know not to believe anything you hear there, my FIL was screaming about us holding him against his will, and that we had kidnapped them. I have never felt so helpless as when he is in crazy town. Sounds like your family just wanted her stuff though? And there is very little appreciation or encouragement for doing this kind of work, except here on this forum.
Be hugged
Christine
Re info email to brothers, again, Margeaux, good points, I think. And my older bro has been described as a bully by other family, too. And yes, younger bro is all but entirely disconnected.
It was my older bros insistence that I keep "everyone" updated with what is going on here at house, and with my dad. So I did. I started CC'ing bro's personal email addy on all the dealings with the Trust, etc... but bro never reads them. And yet all this time of roughly the past year, my bro thinks I'm somehow responsible to pack up my father and get him moved to Indianapolis. My bro has guest room and guest bath in basement of their home - but you better believe my bro says dad isn't going to live with them! So bro doesn't want to be of help, or be involved, but bro puts lots of undue pressure on me to do all the work and is nothing but critical and questioning... In the latest email I tried to convey that I cannot "make" my father move against his will as he has not been deemed incompetent and so is legally able to make his own decisions where he wants to live. He is very clear about wanting to stay in this house. Bro has said previously, on more than one occasion, that "it doesn't matter what dad wants." I disagree.
Sadly, Camaryllis - I've seen a variety of behaviors in family members who were unfortunate enough to have to live with Alz/dementia. Learning/educating others in your family about what to expect and coping methods is the way to go. Treating them like they are still able of correct thinking is both hard on them and hard on you, I would argue. I wish you both great strength, that journey through Alz/dementia isn't easy on anyone.
Everyone have a blessed Wednesday.
So many don't understand or accept what they see with a dementia patient. My mom's sisters are like that. They are personally responsible for mom not getting the right care years ago. They are directly responsible for mom's rapid declines since 2010. They talked her out of help. They whipsered nasty things about me to her. They fed her b.s. day & night that I was going to take all her "money" (ha) and dump her in a nasty black-people filled nursing home. Oh the horror.
Well, mom is in a wonderful clean nursing home now. Yes, there are black people. Whoop de doo. There's brown, red, yellow, white, pink, carmel, coffee latte, weak tea colored, and other people there too. I told her I don't personally care if they have plaid green skin and antlers if they can take care of her and put up with her nonsense.
Ugh. I have a stepson who sends detailed lists of what we 'must' do for FIL, my answer is if he thinks he can do better then he can take FIL home with him. I am not willing to listen to anyone who is not helping tell me what to do. It would be harder, I am sure, if we had more family involved. Thankfully not. It is hard enough dealing with all this and not losing your own mind. You are doing what you must, and you are handling it all so well, be hugged.
Christine
Well said.
Thanks for the info on Teepa Snow...I will go check that out.
Hugs
Christine
I don't know what came over me. The heat. Menopause. General frustration. Possible demon possession..... Anyway, I leaned in close to her and mom-whispered back "I'm sure he's seen older p_ss_ than you got. Absolutely nothing is going to happen to you, and you are really in no position to be picky about who helps you get into clean pants today." As I left the room I could hear her complain that "It's supposed to be youuuuuuu!"
Ahhhhh! I reported it to a nurse and got in the elevator. That was enough. Where is the nearest margarita?
The reason mom is so obsessed over this whole black person thing is that she grew up in the rural south in the late 30s, 40s, & 50s. White women were inculcated from cradle to grave that black men had no greater goal in life than to ravish a white woman. I mean really. It was propaganda from the KKK groups to create a perceived need for their vigilante actions and racial purity insanity. Mom never learned any different. Even though in her whole 76 years, not one black man has ever attempted to touch her with a 50 foot pole. Her own life experience didn't even teach her anything. She still has that brainwashed fear woven into the live parts of her brain to this day.
The sad thing is that most of the health aid workers & attendants at her facility are from Somalia and Liberia. Those folks have been forced out of their homes by soldiers and probably have lost too many family members in the conflicts. I don't know if it meant anything, but I told mom these folks are here because they have to be. I'm sure they would rather be back in their real home with their family members and their own mamma, doing whatever was their profession before, instead of here, having some old white lady call them names, be as difficult as possible, and act like she's afraid of them. It just seems like a slap in the face by fate.
God bless you all, Bunny
Christine - if it is too late for POA, guardianship is in order and gives authority to do what has to be done. Do encourage Charles to pursue POA for with your mil. It is pretty simple through a lawyer. Fil well may have PTSD. I think many vets do. Dementia could make it worse. So glad you found an NH for him!!! It may not shorten his life - the routine and conditions there may benefit him. Good that you are carving out some time for yourself. Congratulations to you and Charles. G and I are looking after other business before us too. Sigh!!! It just has to be that way right now.
Austin - make sure you make time for you and C. It is easy to get caught up in other things.
Glad - Sounds like Teepa Snow has some great info
Sharyn - not much wedding planning going on right now. Dealing with sis and mother's fallout, still waiting on a quote for the basement, G busy with horses, dental surgery tomorrow. I want a burkah to hide my face for a few days. lol Enjoy your time off.
broken - so sorry about your dad and also your g'ma's attitude. I know you are still grieving for your dad and that is normal ((((hugs))))). It may be time for a facility for her - independent living, assisted living or NH according to her ability to function. Does she live with you? Drawing some boundaries when she yells at you should help. Has she been diagnosed with dementia? If you dad was her son she is grieving him too and that is a very hard loss, but still no reason to take it out on you. Do something good for you every day, even something small, and come back and let us now how you are.