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What does someone do, once in MC.
I am not happy with the MC place my mom is in , It is assisted living with Memory care unit. She is in a secure unit, and personally, I think it is a joke, They do not go and wake mom up for meal times, if she is asleep, they leave her to sleep . My mom has always been a person to care about her appearance, and to see her in saggy pants, and t shirts, and her hair a mess, Unacceptable.
I have said something to the caregiving team, I feel I am ignored. I can't go there every day , it is 40 miles round trip , We are working on getting her 401k cashed in, A lot of drama has happened the last 2 months, the POA , quit , and landed everything in our laps, and NOTHING was taken care of . No house bills, Barely paid the facility . So had no choice , but to put mom's house on the market, and That was a nightmare, My mom , was a hoarder , and the house looked like a pig sty ,most of the time, and this was a person, who kept her house neat and tidy. Again . A lot of stuff has happened, since Last May. She fell and broke her back May 2018, fell 26 times. Had a mild stroke in January , Had an intestinal infection that darn near killed her in Feb. Went into Renal issues. and after me shouting for over a year, she needs to go to a facility. Finally . Her family doctor called Adult protection, well I did it in a round about way. and Finally, they said She cannot go home. was diagnosed with Vascular Dementia. She has been having TIAs for Years. not sure how long, cause anytime we would get close to seeing a neurologist. something would happen. She was NOT safe , to live at home any longer. and we had a "family friend" who moved in with her, and one was enabling the other. Truth. but this is a decision the , then POA , made. I am ill. I have emotional issues with my illness. I am having tremendous difficulty , with this situation. I love my mom, I love her with everything in my being. People say , take care of yourself, first, then your mother. That is HARD. I am her only child. and she adopted me . when I was a baby . Long story , very long. anyway . I am trying to deal with this . I do not know what I'm doing, I can't afford Guardianships, Lawyers, Heck the Former POA, didn't even file her taxes in April... I am SO ANGRY , at this person, They didn't do anything wrong, they Flat DIDNT DO ANYTHING! other then preach to me, I'm gonna do what *mom's name* Wants.
I am so dog gone frustrated. and i understand my mom's frustration , she is locked in a place , she can't leave from, She can't just go to the store, when she fancies. I can't take her out anymore, because it becomes a battle to get her in the car, She has prerivial neuropathy, her brain doesnt tell her feet she is standing up , so she falls ,A Lot.
She has moments, of clear thinking, and then she gets her words jumbled up , and they did allow the dog to come live with her , in the beginning, and then said dog cant stay , then they say she can go out and smoke there, and now, they saying it is becoming more and more a problem, so they want her to quit smoking. I mean the things she enjoys , they , have changed.
I thought.. They were suppose to give her a routine. Which has NEVER happened.
I really want to move her. .but I have to wait , till some funds, come through, cause currently , there is a debt , at the facility she is in right now .
but the place, I want her to move to , is about 8 minutes from my house, they get people OUT , twice a week, even if they don't have all cognitive thinking, They take them out for a drive.
Please... God , someone help us .
I can't afford my mom's attorney . which , is who I called immediatly when the former poa , stepped down.
WE can't afford a book keeper, so , my husband got books to keep written documentation of what we spend her fiances on , so everything is , on the up and up .
I am just hitting brick walls of emotions .... and I just need someone to say, It is OK not to go see your mom, or what should I talk about when I go see her. I am getting to where I dread to go see her. and I feel so darn* guilty !
I love my mom...so much . She did so much for me, I want , to do my best for her.
Hello Cynda, and a very warm welcome to you. I am so very sorry for what is happening; this sounds like a significant set of challenges.
I would like to invite you to contact the Alzheimer's Assn. Helpline at (800) 272-3900. If you call, please ask to be transferred to a, Care Consultant. There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are great support, have much information and can often help us with our problem solving.
Also, it may be that Assisted Living level of care is no longer a good setting for your mother; it sounds as though she would benefit from a higher direct level of care. You can discuss that with the Consultant as well as with the supervising nurse at your mother's facility if they are able to be discerning about that.
When our Loved Ones reach a certain state, in order to do as well as can be, they need to be in a setting of adequate routine and structure; from what you have written, the setting your mother is in does not sound as though it is able to provide this need or the level of care she needs. Your mother's dementia may have progressed to a point that she needs much more direct care and oversight. Her reasoning, judgment and even ability to process matters appropriately are compromised from the damage to her brain.
It will take some time to get things organized as you have so much to be addressed; you have already got a good start and you are to be commended for all you are doing. Once things are in place, all will go much more smoothly.
And no; one does not have to visit one's Loved One, (LO), frequently; while you are so immersed in all that needs doing, it may be that you can cut back on visits to enable you to do what needs to be addressed. It is necessary however, to visit at intervals or have other responsible individuals visit to ensure that your mother's care is adequate and things are going well while other plans are being made. Just be sure you are getting her to the right level of care for needs. Assisted Living is just that; a bit of assistance but NOT routine hands on care throughout the day and also at night if the need arises.
When you have time, you can contact the Bar Association and ask about Elder Law Attorneys that donate their time pro bono. Also, for those who do not have funds, there is usually in every county, a way to obtain Guardianship either at far less cost or at no cost; one would want to look into this at the court or through an attorney. NOTE: Many attorneys, (and you would be best served by an Elder Law Attorney), will speak to you the first time at no cost. You may want to look into this; just be sure to ask the office up front to ensure you do not incur any fees.
When you have time, you can begin to screen other facilites perhaps nearer you that perhaps can meet your mother's needs as they have evolved.
Let us know how you are doing, we will be thinking of you.
Whoops! Forgot to give you a good resource re dementia. This is an excellent writing by dementia expert, Jennifer Ghent-Fuller; "Understanding the Dementia Experience." She has given permission for anyone to download, read and print off her writing:
Dear Cynda, oh my. This is quite a plateful for you! Have you spoken to management? If you signed a "Care Plan", which is law in Virginia anyway, you can sit down with the upper staff of nursing and the executive director, and make changes to it, including being woken for meals.
For clothes, did you label and send the clothes she liked? It may be that at the moment of dressing that something else appeals to her. My mom needs lots of help dressing, and staff pick her outfit and dress her. Those clothing labels are very important. Mostly we don't see other residents' clothes in her closet any more-- staff learned her wardrobe.
Can't help you in the smoking. When Mom moved in there were 4 smokers, which meant that any time we wanted to go out in the courtyard someone was smoking there. I have asthma and can't handle it, so I lobbied very hard for "equal rights for non-smokers". It didn't work well, but time took its toll and there is currently only one smoker. I will tell you that my MIL (about 90 at the time) (mother in law) smoked like a chimney for 75 years, until her daughters finally stopped buying them because amputation of a leg was a serious probability unless she quit. After a couple of months we were able to say, if she mentioned ciggies, "oh you quit smoking a LONG time ago!" LOLOL -- and she bought that.
Jo has given you excellent advice on resources. Keep reading around on here, you will find much good advice and writing!
Do you have a copy of the POA? Is it a Durable/Springing POA? Read it carefully to see exactly what the agent is responsible
Reading your post ticked off so many checkmarks for me - the strokes, gastrointestinal infection, renal issues, cashing in the IRA, cleaning out the condo and putting it for sale, etc.
You basically just described my 2019. I'm an only child and have been through it all this year.
I don't have specific advice right now but I just wanted to let you know that you are not alone. Vascular Dementia is cruel and takes its toll on more than just the person who has it. Nobody gets around this easily and you just have to buckle down and learn about every option. It will eat up all your time and emotions, trust me. People who say "take care of yourself first" don't understand that it's just not possible yet.
Take one issue per day and solve it, like "Wednesday I'm going to call the cable company and not worry about the Social Security people until Friday. Thursday is for calling Comcast." Like that, one thing per day, some things just have to wait until you can get to them.
I absolutely dread going to see my dad now. It's understandable. It's ok. Last week I said I was going Wednesday after work but drove straight home from work instead. It's ok, I went Thursday and he didn't know the difference. It took a lot to allow myself to do that, there were some tears, but I did and it was fine. I needed the day off from him.
Sorry I can't think of any concrete advice right now, but just know you're not alone and you don't have to feel guilty about your feelings. The whole thing sucks and it's only natural.
Thank You all for your words. My mom is in Huber Heights, Ohio , at the moment. I am going to move her to a closer location, My husband is now POA, We are taking one thing at a time, First was to get her 401k cashed in , which cheque is in the mail for that
Next, sell house, It is empty and on market, That took 3 weeks to do , Ok that's in the works.
Hubby wrote to each one of the insurance companies and investments, to see what was what ,on her fiances , as we think most of them have lapsed, sadly . but we are in the process of that. Ok that's in the works.
I have gone to a place, that is just for Alzheimers /Dementia facility ONLY. It ticks all the boxes for us, and I hope it will be a better fit for her, and only 10 minutes from where we live, instead of 45 minutes each way .
I do not think it will take long , for all her assets to be liquidated, then there is the issue of Medicaid in the state of Ohio , No idea what that is gonna entail , but we are atleast 8 months to a year ,before that runs out. So , soon as we get her moved, we'll start that process.
I have forwarded the info about the Elderly law , attorney to my husband. we have been to the alzhimers association, and they were the ones pointed me to this forum.
I volunteered for many years, at a local senior center, so , I am using those resourses I learned, to help me, also , knowing , how to be a caregiver and such, also has helped with the expriances I've had. I am 49 , My mother is 78. and my husband is soon to be 68. and as honest is the day is long. I am happy , check that, I am Elated, that the former POA finally stepped down , resigned, and is OUT of our life, She didn't do anything wrong, per say ,
She just flat didn't Do anything, 6 months my mom has been in this facility , bills at home not paid, but not turned off either, House not cleared out, I did that in 2 weekends, This past month, thanks to a bunch of friends and the community coming to help . and NO communication other then text messages, would text me like 10pm the night before, saying Your mom has a doctor's appointment tomorrow at 10am , You have to take her.... frustrated me , to no end. claiming, she had to work, and I had nothing important to do , Really?! so yea.. I got peeved.
Sending a very upsetting Email the morning she resigned saying nasty things , untrue things, about me, and just slicing and dicing me with words. NOT cool , and then this person , LIED , the day before, stating my mom's beloved dog died, and I , had to go tell her, Mind you ,said person lived 3 minutes from where my mom is currently a resident, so I did .. didn't know it was a Lie at the time ....not more then 6 hours later, On Facebook, a mutual friend showed me, a poster this person had posted, wanting to rehome, my mother's dog, Seriously?! Printed that, cause I was gonna call her on it , NEXT morning, I get said email , and I resign on it , I had yet had a moment to even let this person know, I knew about their LIE, not more then oh 20 minutes later, I get a call , from the Dog's Vet, stating that this person, had called to book an appointment , to put the dog down , I said your calling me , because? she said you are co owner of the dog, I said in other words, You want me to pay , She said well , Yes, I suppose so , I said, may I tell you of the last 24 hours ? I went on to state the situation, Vet said, under the circumstances, would you come sign the paperwork and such , I said , i'll just take possession of the dog, who is 14. Vet says, i know you , i have known you since you were a teen, I know you love this dog, So , I think it is more kind, then cruel to put (dog's name) to sleep, She is very sick. I said , Fair enough . I however, want to be with the dog, when you do this, She should have someone who loves her as much as my mother has ,with her. .Vet Agrees .. so 3 days leter, we put the dog to sleep , and I told the Vet, Miss so and so, can drop the dog off. .and I will come , but do not have her stay ,cause I won't be nice. She said she understood.. I tell you the truth , when i pulled into the parking lot, said person was standing in the parking lot, it took everything in my power, not to bulldoze the person over with the car.. I didn't , but I sure wanted to , They said nothing, but got in their car and left. so ..You see.. .i have had my fill of people. and NOW , my mother's care, is back , in the place it should be.. in my hands , as her daughter and the one who loves her the most in this world.. Not , some 2 bit , X family member. who was my uncle's x wife. long story ,but I am just happy and will be happy , to move my mom out of where she is now, to somewhere , this person can have zero access to her.
Whew! That has been an awful lot on your plate and I am sorry. You and your husband are doing a great job if it all. Once things are in place and your mother moved, things will in all probability be ever so much better for everyone.
Take good care and let us know how things are going,
Best of luck to you, Cynda. It sounds like you are charging through the list of to-dos. You are SO blessed to have a hubby to help.
Like Ken B., 2019 has been the year from hell where every issue with this effing disease has managed to rear its ugly head in some form. Here's praying that since it came in like a lion, it will go out like a lamb for all of us!
Dear Cynda, it is very clear how much you love and care about your Mother! You have so much to deal with. I’m glad you have a husband who is helping you with all of this. Ken made some excellent points in his post. The others did also.
You have already made a lot of progress for your Mother. Great job! I hope the house sells quickly. That’s always a ton of stress by itself.
I just wanted to wish you well and welcome you to this site. The people here have been so much help to me in so many ways. Please keep us in the loop and let us know how things are going.