It's like a bad relay. Some days it still works and some days it won't. The early years you have good days and bad days, then you have bad days and worse days...
Considering the distance factor, you might do well with a professional geriatric advocate who can coordinate what is needed with your aunt. There are professional associations who do this, their members are bonded and licenses.
From my experience with my foster dad who slowly developed dementia, what you're describing definitely doesn't sound like dementia but something else going on. I also noticed someone else later on he'll slowly started developing dementia, and I can't tell you for a fact that what you're describing definitely doesn't sound like dementia at all. I would take the patient to a neurologist and get them properly evaluated to see what's really going on
Hi AZAUNT0926! Sounds like an overwhelming array of tough, complex issues! I didn't know until it happened to my Mother that Urinary Tract Infections can make elderly go around the bend! Several years ago I thought my Mom had completely lost her mind. She would even reach into the air to touch things not there, couldn't remember and constantly repeated same questions, got really strange ideas, and personality changes. A couple of weeks after the UTI cleared her mind came completely back, and the oddest thing is she didn't remember anything about her mental state during the infection. This happened several times over the years as my Mom is prone to UTIs. Her symptoms aren't always obvious early on and she is either allergic to or doesn't have good responses with a lot of antibiotics. Catheters greatly increase the chances of infection, and they complicate testing. Some bacteria always live in the tubing so doctors wont test or treat until the symptoms become "obvious". Recently my Mother had a stroke and after rehab they sent her home with a Catheter. I strongly suspected she had UTI but couldn't get a response from the doctors and she ended up in the hospital, the infection having gone all the way to her kidneys. Also the Catheter was causing her extreme pain which she couldn't communicate because of the recent stroke. They took the catheter out and relaxed the rule about how many cc's in bladder before they would straight cath. It was three months before she was free of the infection. And yes, good luck on trying to call around and get someone to do appropriate testing and treatment on time with necessary followups. There is also the possibility your Aunt has had small strokes which are affecting her personality and causing her confusion and memory loss. She is probably lonely, tired and scared as you also may be feeling by this time. It's can be very difficult to find one, but she needs a responsible doctor who can/will thoroughly assess her needs, refer to appropriate appropriate specialists and coordinate whatever care she needs. Perhaps her insurance or medical clinic can provide a "Nurse Case Manager" to do this. Can the Asst. Living Owners help you?
It is going to cost money. You and your aunt need an advocate for her. A paid home health type, or a case worker who can take her to appointments and provide continuity of care and information. If you were closer, it would be you. It is going to take weeks for everyone to get on the same page, and your aunt is not a reliable source of information right now. Perhaps she has a friend who could help for pay. It is never wrong to make it worth someone's time to help out. Our family says, "Cheap at twice the price" compared to lost work days and airfare. Good luck, it is difficult when close, and heartbreaking from far away.
Isabelsdaughter, your mom probably had a different problem than AZAUNTY0926 aunt did/has. it takes endless hours of research and observation to detect individual problems that's why doctors can't do it in a fifteen minute appointment. we're on our own. grateful for the internet ... (my opinion)
for a UTI load up on these foods water, cranberry Juice, yogurt, garlic. if you don't know how to research on-line have someone teach you. learn how to google stuff. we're all going to get old and have health issues so might as well start learning now how to take of ourselves bcs doctors are being taught to prescribe pills, do invasive tests, and keep us coming back (my opinion)
Cranberries. Juice them with apples for a sweeter taste. Here is a link: http://healthyeating.sfgate.com/foods-promote-healthy-urinary-tract-system-5170.html
My mother had LBD. She started to become very quiet and she seemed depressed. She stopped cooking, doing normal everyday things she had always done. Then she started hallucinating, and never came back. They put her on meds, and she slept all the time. I don't know if you can go in and out of dementia, but my mom never did.
cccquilter -- I would appreciate it if you could list the foods that are helpful for urinary tract health. It would be helpful information to have. Thank you.
I agree with willardmoxy. Medications can interact and cause the kind of confusion you are seeing. If you can, get her medications checked for interactions for sure and get her onto the bare minimum. Medications themselves can have nasty side effects. Medications have their place, but can do more harm than good in some situations. Try to see that she is eating a whole foods diet; less boxed foods and more fresh foods. Real food will boost her mood along with a minimum of medication. There are foods that are very good for urinary tract health. You might see a turn around in her lookout and attitude with a healthy diet and minimum medications; only those that are absolutely necessary and checked thoroughly for interactions. I have seen many elderly that were so overmedicated they were diagnosed with Alzheimers, but when the medications were minimized they had a complete turnaround. More people need to be aware of this!
this is just the way I see it, not every one will agree with me. each time your aunt saw a doctor they said she was fine then scheduled her to come back and some or all of them were writing prescriptions. you wrote, "She said she had medication everywhere". in my opinion doctors are over prescribing medications and causing the kinds of problems your aunt is having. google the side effects of some that she is taking. that's why her so called dementia can come on suddenly and clear up suddenly. medical students are being taught to prescribe drugs and invasive tests. that's all. at age seventy five I take no pharmaceuticals. doctors were handing me pills from the first day I started seeing them for extreme fatigue while the real problem was malnutrition, anemia, and heart block from many years of trying to be vegan. even worse than their incompetance was their condescending attitudes. doing my own research I figured out the obvious. I now eat steak and eggs for breakfast along with citrus fruit. I drink smoothies made of fruit and leafy green veggies. within a couple of days of eating healthy and getting outside I felt good again. if I go a single day without eating right I become fatigued again bcs at my age and your aunts age our absorption of nutrients is not as good and we need to replenish nutrients every single day. I think your aunt would get the best care from a naturopathic doctor if you can find one near her. if not then find a doctor who will wean her off medications, especially psychopathic medications, and get her on a natural foods diet. that is my personal opinion and not medical advice.
Dementia almost never comes on quickly. Probably she had mild/early dementia, and then developed delirium while ill. Delirium is a state of worse-than-usual mental function which often comes on when people are sick. It can also be brought on by medications such as Elavil and Xanax.
Doctors are not supposed to stage dementia while people are delirious or have recently been ill, because it can take weeks (or even months) for people to recover to their best mental state after having delirium. Unfortunately, delirium can accelerate cognitive decline and some people with dementia never recover to the way they were before becoming ill.
In terms of your role as POA: usually the POA can act (or override) the older person once that older person is mentally incapacitated. The problem is that most POA documents are not designed to fit with an older person getting mentally worse, and then recovering after delirium.
In principle, now that your aunt has gotten better, her doctors should reassess her mental capacities, and confirm that she is still impaired enough for you to manage her affairs. I seriously doubt she'd still be considered "late-stage dementia"; in late-stage people can't walk, can barely talk, and barely recognize anyone. What you are describing now sounds more in the early-middle stage. But she will be prone to become very confused again when she is ill, and the nature of dementia is that people tend to slowly get worse over the years. So you should certainly be preparing to provide more help and oversight.
As for how to cope with her behavior and the situation...you will need information and support from others with experience and knowledge.
I would recommend posting more questions to the caregivers on this forum. Many people here have been through similar situations and you will get a lot of good advice.
Other resources to consider include Family Caregiver Alliance, the Alzheimer's Association, and your local Area Agency on Aging.
I'm sorry you have to go through this. Although she's not being appreciative, she's lucky to have you. And if you feel you can't do this or if you feel overwhelmed, ask the other family caregivers here for help. Good luck!
I live in NY and my Aunt (78) lives in AZ. My Aunt only had one child and passed away several years ago. Her husband also passed away. Growing up I would spend every summer with her and she became like a second mother to me. Now I am 47 own a home and have five children (2) at home. Since my uncle passed away seven years ago my Aunt has lived alone in her home and been fully functioning. We text everyday, talk on the phone a couple times a month and I have gone out there for a week every year for Thanks Giving. When my Uncle passed away she she gave me Medical, Mental and Durable POA and I am listed on her will to receive all that is left if she should pass. Our relationship has been a very big part of my life and we have always been super close. Early this year she has become very demanding in the sense that she text messages me she expects a reply immediately and if she doesn't get one she will continue to send text messages and say WHY ARE YOU NOT ANSWERING ME!!! Often these will be times when I am at work or even sleeping because of the time difference. Her personality has changed in the way that she will be very blunt about things like I sent her a picture of my son and daughter and all she said was wow Devon is so skinny and Ally is very over weight. This situation has caused me to back off a bit from her because I don't want to cause issues when we are 3000 miles from each other. In the past few years I have seen changes in her such as memory and energy. I really just chalked it up as well she is getting older. In April of this year her dog was diagnosed with some kind of spinal issue and she declined very rapidly. In a matter of a month in a half she went from fully functioning to not remembering how to plug her cell phone in. She had fallen three times without being able to get up without help and finally the only friends she has there called an ambulance and had her taken to the hospital. I was told by the doctor at the hospital that this was all caused due to her having a UTI and that she had two different doctors she was seeing and between the two she was completely over medicated on Elivil, Vicadin, and zanex. She was in the hospital for a bout a week and a half and I could tell from texting and talking on the phone she was getting much better every day. She was released from the hospital back to her home and with in two days she was texting me she was confused didnt think she was feeding her animals (2 dogs & 2 cats). She said she had medication everywhere didn't know what to take or when to take it and she was really scared. She begged me to come out there rite away said she didn't feel safe being alone but refused to go back to the hospital. I had to get my affairs at work and home in order to go out there so it would be a week. For the tree days she was OK if I texted with her non stop with out any delay in responding but then she stopped eating completely so I finally called and had her taken back to the hospital. By the time I had gotten there she has been moved to a rehab/nursing home. She was very confused had no idea what had happen in the past couple months but was very clear she was totally confused and asked me to take over everything for her. She told me she knew she couldn't live alone anymore. The first SLIMS test they gave her showed late stage dementia. As I tried to take over her bills and bank accounts and figure out what was what she had no idea where she banked what the password was to open her computer, what company cleaned her pool pretty much nothing. I was able too figure all of it out and contact all companies and provide my DPOA so that I could mange her home and bills. She was very sweet and appreciative and said she couldn't handle any of it and thanked me endlessly for doing it. When she entered the hospital they placed a catarrh in and she would not let them take it out. I was there for two weeks and the plan was I would I would put her home up for sale put an addition on my home and move her to NY. She was all for it. Being completely over whelmed the entire situation I returned home. My husband and I were going back and forth on bringing her here or moving out there with her so I didn't put her house on the market. When I left there I had an appointment set up for her to see a Urologist and a Neurologist. The appointment with the Urologist was a joke because the rehab center transported her there but did not give any information on her and she went into the doctor by herself. After the appointment I asked her about what happened and she said she was told she would just have a follow up appointment in three months. So I called the social worker at the rehab and was like what transpired with this visit. They are completely useless so I called the Urologist and she said my Aunt told her she had been self cathing at home and didn't want the permanent caritor taken out so they just changed it. I said she was not self cathing at home and the reason for the visit was to find out why she had urine retention. So the doctor was like oh I'm so glad you called and gave me that information. She said she would send over a script to the rehab for my Aunt to have a CMG done at the hospital to see if her blatter muscle is working. So with about a week and a half of phone calls the script was finally found and now the test can not be done until 7/14/2017. The rehab told me I would get at least three weeks notice to when she would be released from there but instead gave me eight days. That same day she had the appointment with the Neurologist. Now at this point her memory was coming back more and more everyday and was doing much better but still in no way ALL there. I thought I would be proactive with this appointment and two days prior to the appointment I faxed a 30 page fax to the neurologist with all her hospital paper work, the slums test and a letter explaining in detail what has happen in the last three months. My Aunt told me the doctor said she was fine and if she had another episode to come back!!! I have been unable to get any information as far a report from the rehab and have called the doctors office 3 times without a call back. Since she started to get her faculties back her personality has changed completely. Her attitude was that I should be able to jump on a plane and be there to get her with 8 eights notice even though she is still cathed and has an upcoming very important test. I was able to have her moved to a assisted living home that is a house near her own that cares for seven people. The house is beautiful and the owners are wonderful to her. After having a full blow tissy the day she was moved there she has since become a tyrant to me. Wanting to know why I have her credit cards and check book and telling me she is capable of caring for herself and can manage her finances and has gotten so nasty and mad at me she has told me she has rethought the whole idea of moving to NY and thinks that after she gets off the cathitor she can return to her own home. Every time I call her on what she is saying and tell her I don't agree she turns it around and wants to know how and why I am being so mean to her. At this point I have a hold on everything as far as selling her home and starting to put an addition on my home. I don't want to totally back off from communication with her but it seems every time we text it ends up with her getting nasty questioning my decisions and I just get so upset that I don't even want to have contact with her.
The early years you have good days and bad days, then you have bad days and worse days...
Doctors are not supposed to stage dementia while people are delirious or have recently been ill, because it can take weeks (or even months) for people to recover to their best mental state after having delirium. Unfortunately, delirium can accelerate cognitive decline and some people with dementia never recover to the way they were before becoming ill.
In terms of your role as POA: usually the POA can act (or override) the older person once that older person is mentally incapacitated. The problem is that most POA documents are not designed to fit with an older person getting mentally worse, and then recovering after delirium.
In principle, now that your aunt has gotten better, her doctors should reassess her mental capacities, and confirm that she is still impaired enough for you to manage her affairs. I seriously doubt she'd still be considered "late-stage dementia"; in late-stage people can't walk, can barely talk, and barely recognize anyone. What you are describing now sounds more in the early-middle stage. But she will be prone to become very confused again when she is ill, and the nature of dementia is that people tend to slowly get worse over the years. So you should certainly be preparing to provide more help and oversight.
As for how to cope with her behavior and the situation...you will need information and support from others with experience and knowledge.
I would recommend posting more questions to the caregivers on this forum. Many people here have been through similar situations and you will get a lot of good advice.
Other resources to consider include Family Caregiver Alliance, the Alzheimer's Association, and your local Area Agency on Aging.
I'm sorry you have to go through this. Although she's not being appreciative, she's lucky to have you. And if you feel you can't do this or if you feel overwhelmed, ask the other family caregivers here for help. Good luck!