Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
Find Care & Housing
Oregon Girl and Jam, my mother passed away last month, and over the last two years (of many many years of caregiving) there were so many health crises, one after another after another. I would adapt our house, her room, her protocol, her schedule, babysitters, my outside work schedule, to whatever new level of functioning she had (which went both down AND up), and then it would change again. The lack of predictability day to day, and the lack of sleep was the hardest thing for me, and although I always think I can handle anything, my body did not agree. I was left with runaway high blood pressure, currently not responding to medication, and a very broken-down health status. In our case, hospice did NOT help, but only added to the stress and unpredictability with their suspicious judgementalism of our alternative health practices, and their erratic drop-in schedule. I agree -- family did not want to know, or help. They wanted to imagine that some magical all-expense-paid services were doing all that needed to be done. My feeling after this experience is that our modern day society is not set up for the kind of job that family caregiving becomes, over time. The only way this would really work, would be, possibly, in a tribal living situation, where many healthy adults were on hand to help at all times, and the elder was part of the daily life of the whole group. I have also seen it work when there is a strong marriage, and the husband can do without his wife, yet give support, for years on end, as she cares for her parents, as well as his. Going it alone was personally, physically, socially, financially devastating to me, and I am struggling to recover my health first, then set out to repair my finances and my future. Sorry to be such a downer, but I was like a soldier in a war zone -- just dealing with the next challenge as it came -- it is only now, when I am out of it, that I can assess it take stock of its effects upon me.
(3)
Report

Oh, Monday, I hate to hear you sounding like this :( I know this has been a hard blow, too much for me to understand, and I don't want to give you advice that won't help you. I just really want you to find someone who will help you out of your depression and despair, and to find joy in living. Surely there is someone out there for you, a friend or a pet, even if you haven't found them yet. Please don't give up. I know you probably don't want me to say this, but at least read the Psalms and the Gospel of John; they have been a great comfort to me many times.
I wish I could just give you a huge bear hug right now. I know you're feeling low; I know you are hurting so much; I know everything seems bleak and hopeless. Just please, please don't give up. There ARE people who care about you. WE care about YOU! And please keep posting here, even if it's only to vent your grief, anger, anything. We want to know how you're doing; if you stop posting, we'll worry about you. Just don't. give. up.
(8)
Report

Monday, please call for some professional help on Monday morning or call 911 if things get much worse beforehand. You are not alone! There is help! Please reach out for help?!
(4)
Report

Monday, is there someone there you used to feel safe, comfortable with? Have you ever gone to therapy and really liked the therapist? Someone you can turn to? Would you be willing to call the 1800 suicide hotline? I'm so, so sorry. {{{{HUGS}}}
(5)
Report

DEAR MONDAY,
Would you please make it a point to check in here with your caregiving friends regularly, while you are feeling so low? How about every 3 hours, unless you are sleeping?
My brother (years ago) came over and said: "No wonder you are depressed, there is no light in here!" So raise the blinds. However, brother did not know why I was depressed, but his visit helped me.
Just checking in.
(4)
Report

Where are you at? Monday, screen name Monday, can you let us know where you are, in case we need to send help to you?
If there is anything I first learned was to call 911 myself when things got bad.
(3)
Report

I wanted to check back in today. Been a while since I have been on here. The last 4 months have been rough but It got to the point with my mom that my care wasn't good enough so I had to place her in alzheimers unit. Her doctor thought a unlocked unit was ok but she tried to escape. But only safe place I could find for her is 50 miles away but its worth it. I really started this back in Jauary doing nursing home tours ad looking into medicaid. I never let my mind think about a nursing home but I didn't want to fail my mom she deserves the best care and I'm still there to help her just not on a fulltime basis. Hugs to everyone. The last few years this place has always been a safe place I could hide out, connect with others. I'm trying to adjust because being alone is no fun and its hard to leave mom when i visit her but i know this is the best for her.
(6)
Report

Chrissy, right there with you and welcome back! My mom too was placed in a memory care unit locked, the end of May. I too, am now alone much of the time. If not for my friends here I don't know how I would be feeling. It is lonely, but refreshing at the same time. I was always worrying about mom, still do but a very dysfunctional family just wants me out of the picture entirely. Even when I go to visit I feel like I am treated by the directors like I am the plague. Very hard to go see her because of that. In fact, they have monthly family dinners and my freaking twisted sister gave them an address to notify me where she knows I cannot live because of a fire at my home last August. Just so much vindictiveness from my sibs after nearly four years of 24/7/365 care for my mom.

My mom has had a very difficult time adjusting and even tried to climb a six foot fence to get out. Her hubby went to assisted living at the same facility. Initially, they would wake him at 7:00 each morning to have breakfast with mom the early riser. That lasted about a week, until I put a stop to it, he is a late sleeper. They had all meals together in the beginning, now only lunch because mom's sundowning behaviors are quite impossible. She had to have a 24/7 outside caregiver for her first five weeks. Then another week and a half of someone from 1-9 to assist with the sundowning. I am still waiting for the facility to say they are not able to provide the level of care that she needs.

So, Chrissy, we are now retired from our 168 hour a week caregiving jobs. Trying to figure out what is next in life, and a roller coaster of emotions. Keep coming back.
(5)
Report

Hi Chrissy, thanks for updating us. I'm glad that you were able to find it within you to have your mom move in to a place that can handle her better 24/7. Even with my limited family support, it was very exhausting.

Glad, I somehow knew that the TS's would eventually turn the staff against you. I really really hope you find a job soon. Do you think the 'blot' from your former job is following you? Hence, you made it to the top, but got dropped out?
(3)
Report

I don't think leaving my previous job due to a family emergency would have an effect, but you may be right too. Who the heck knows. By documenting four years of caregiving, it also says something about my age which could be a factor. And employers, I believe, are discriminating against caregivers as well.

And not only staff at the facility, also L's daughter is now consulting with ts2 on L's care, like she has a freaking clue about that! The blind leading the blinder.
(2)
Report

Can we just review the word caregiver when applying for a job. I want to put side by side the essential criteria for a job posting I have seen out 'there' over many years

Caregiver Personal Assistant
Multi tasking Multi tasking
Taking messages Taking messages
Managing appointments Managing appointments
Driving essential Driving essential
Attention to details Attention to details
Financial recording Financial recording
A willingness to learn A willingness to learn
Computer skills Computer skills
Able to work unsocial hours Able to work unsocial hours
Some weekend work involved Some weekend work involved
Able to handle awkward situations Able to handle awkward situations

Now tell me there is one of you who could not be a PA
(4)
Report

Glad- no matter how much the directors treat you, just do your best to ignore it. You can draw more flies with honey than vinegar. So grit your teeth and be all smiles and greet them. It may take months (or not) before they see that your actions belie TS words. It must be very very difficult for you. Don't let them know because that's what they want- to isolate you, to look like the black sheep and ignorant fool. Actions speak louder than words (even if you want to yell at them for being foolish listening to the TS.

As for L's daughter, when he was home with you, she rarely visited. Just like the TS rarely visited their mom. Perhaps they have a lot more in common than you thought. I was very disappointed when she started changing towards you. TS are very very good at doing this. Watch your back, Glad. I think eventually, when all is over, to completely have nothing to do with TS and Aunt, L's daughter, etc.. {{{{Hugs}}}
(1)
Report

Agreed, Book. Need a new neighbor?
(1)
Report

You will run into the same situation here -hard to find jobs. You will need to work 2 part time jobs to make ends meet. A decent apartment costs over $700 month. Anything lower means you're in a high crime area, or flood zone....
(3)
Report

Glad - i'm so sorry your family is treating you that way. My family just does the same pretty much ignores her like they did when she was home. I have to preach to my brother about things but he does go to visit her i guess he just sits on his cellphone. I visit 3 times a week...its a 100 mile roundtrip to see her.

The area I live in illinois had such a long waiting list for memory care units but i think this one is the perfect fit its a smaller one and she seems to be fitting in well. I still worry about her everyday but nothing like before. She doesn't cuss me out like she did at home. Now when im leaving she says I love you and when will u return. Sometimes her sundowners is really bad at night but if she is having bad episode I dont stay long. I try to get her settled in bed before I leave before I leave I get there after 6pm because of my hours I work.
(2)
Report

Well I had a pretty good day... garden day! I baked 2 loaves of zuchinni bread and made 2 pans of stuffed peppers.. yummy!! hubs made bacon wrapped shrimp to share with the neighbor who watched our cats while we were away.. going to barbque them tomorrow to deliver. It is hotter than hades here today.. thank goodness for AC!! However next week I get to spend 3 days at the river with the ILs and my hubs and mom,, so we can get them out of the house while BIL and wife are gone. Sitter duty for us... but it will be OK I hope!!
(0)
Report

Hi Chrissy, I'm glad you were able to find a memory care for your mom. Thanks for updating us. Sorry, using iPad and typing with 2 fingers..slow going and dad wants his pamper change, now 9:30pm.

I spent all day catching up with all of dad's accounts like reconciling his credit card statement, checking and savings accounts-starting January. I really need to stop procrastinating on this. I tend to dump the statements on the in-box. All day! Now, I need to do my own statements...maybe tomorrow night.

Fave sis hinted that I need to find a paid caregiver for Saturdays. I am now gun shy on hiring strangers. Too bad the security camera is only for viewing. I downloaded the camera app on my iPad. I can take photos from work, but no sounds. Later, it's getting late.
(2)
Report

Hi Pam!
(1)
Report

Book....its rough trying to hire a private caregiver, stranger or not. I hired a friend of a friend which was ok we had her for year. I had a six year struggle with homecare and adult daycare. My siblings always had lots of ideas for ME but never wanted to change the routine of when they would visit. holidays and birthdays to visit were nice when we were younger and parents were healthier but change needed to be done. Then they were concerned I was stressed and tired...well no surprise no sleep and dealing with her sundowners was difficult. After Christmas I just came to the realization that i needed to get mom more help. It broke my heart but .like my caregiver counselor told me Im not SUPERWOMAN.

Going to visit mom today take her lunch and going to color her hair in the beauty salon at nursing home. I've tried to get her to go grey but that just wont happen...hope everyone has a great Sunday
(1)
Report

Mom still not eating and Dr. said Thursday she has acid reflux bad. Put her on Prilosec and took away the Ranitidine. She seems a lot better. She has been coughing like crazy. Makes me nervous. It is from sinus, put more pillows under her back and head. She likes that, but keeps skooting down in the bed, ha .She has a nervous cough anyway. She use to cough to hear herself. Now I think it is sinus. Whoa is me! My husband did not get a refill this month for his Memantine, 2 pills left. No response from his nuerologists. I had just bragged on the VA and oops. I think he is mad at Joe because he is not using CPAP machine. He is claustrophobic and not matter what they do to the attachments for face, or how many changes they made to the air flow he will start out okay for about an hour and then when he falls to sleep he freaks out and jerks it off and then we go through the sundowners bit. Yikes, I hate this. Without the CPAP we do pretty good and if he starts the sundowners and won't sleep, I give him Tylenol PM and it works for him. So far, Thank GOD. I am not going to church today, watching John Hagee on TV and praying for things to slow down a bit. Hugs and love to all! Trying to hang in here and praying a lot.I love you all and this site. You all are in misery with me, that makes me feel better for some crazy reason. I guess I feel this is a battle and we are going to win some way and some day! Hard telling what the future holds, I may need to place my Momma or my husband someday. Only GOD knows whats going to happen.
Chrissy you did the best you could do! One day at a time. GOD Bless! We can only take so much and then we do what we need to do! You are still doing a wonderful job and loving your Mom. That's what it's all about, LOVE is the answer! You got this!
(1)
Report

I meant to say Mom is still not eating much. But she is eating a little bit more than before. Very small meals, like a 1/5 the of what ever I give her. Instead of 1 bite she eats about 5 bites now. She is just getting ready to leave this world, I think. The doctor said the dementia is getting worse so just do the best I can and call him if I need him.
(1)
Report

Hmm... I remembered typing my response this morning. I must have fallen asleep and never hit the "POST" button. Can't even remember what I posted.

I haven't started searching for the Saturday caregiver. Procrastinating.
College - acid reflux is awful. I can get it for months, being miserable. And then months with no sign at all. I really do need to keep a food journal. So, that I can see what I'm doing wrong that is causing it, and what I'm doing right when I'm 'normal.' As for hubby and the CPAP, even baby bro refuses to use his. And he has no excuse not to use it.
(1)
Report

Hubby does use his CPAP regularily every night and it really helps. i think I saw somewhere that there is a new model that just goes over the nose and is not as constricting.
(0)
Report

They gave my Hubby the mask and it failed then we got the nose piece only and no way. He can't stand anything on his face. I hope they come up with something that will work. I wouldn't like it either. The noise from the CPAP machine is pretty bad.
(1)
Report

Mom is taking her meds and doing okay, still coughing a lot from sinus. Grass allergies are bad now.
(0)
Report

Mother had her 6 month check up, but dr didnt perform a memory/cognitive test this time. When we got there for her appt, the receptionist said, 'oh you dont have an appt today...looks like it was canceled in May'....mom strikes again. This is twice shes called and canceled appts without my knowledge. The fiest time i made sure to call the office and tell them....dont change or cancel any appts without checking with me first!! So they said they put a note on her file for that. And what happens?...she cancels her next appt and no one contacts me first. I was livid. Fortunately they fit her in and we didnt have to wait but 15 mins. When i scheduled her next appt, i put the reminder card in my purse and didnt put it on her calendar at home. Now she wont cancel it because she doesnt know when it is....things like this are so frustrating.
(2)
Report

What exactly is sundowners...do they get extremely anxious and agitated? What other symptoms are there?
(0)
Report

Being a bit tired tonight, I suggest place the word sundowners in the search site both in the upper right hand corner of this page. The press the search symbol that looks like a magnifying glass and you will see several articles that will answer your questions.

Take care.
(1)
Report

Sheryl, increased agitation, anxiety, confusion, pretty much what you probably see all the time but very intensified! I would say at least 10 times worse.
(1)
Report

College, it's interesting you said your Mom has nervous cough, just to hear herself, my FIL does this along with throat clearing, humming and muttering, ALL THE TIME! It drives me Crazy, and he has been doing this for 11 years. I would say he has some age related Senility, but he has never been diagnosed with any dementia of any sort as yet. Why do they do this, is it attention getting behavior? He is a very early riser, like 4:39 am, and I think he gets his kicks out of waking us up. When I have mentioned it to him, he rears back at me and says " everybody does annoying things, You whistle and sing", Really,? Ya, but I'm conscious of doing them! And thers no getting through to him, and. He won't change. Ugh!
(1)
Report

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