It's common to feel negative and resentful when you are in a situation you didn't choose. No matter how much you love and care about your loved one, it's natural to have some resentment when you spend so much time and energy caring for someone you hadn't really planned on.
Maybe you don't resent them at all. Maybe you resent the situation. Their illness, unhelpful family, unsupportive friends, certain behaviors your loved one deals with.
In truth, you want to suppress these feelings. You don't WANT to feel this way because you really do love the person you are caring for, so you feel guilty for having these feelings.
Being falsely accused can be tough for anyone to handle. When it's someone you love, who has Alzheimer's or some other form of dementia, who accuses you of terrible things, it can be especially difficult.
Often that is the case though. It is often the ones who are closest to the loved one with dementia who is accused of terrible things because they believe that bad things are happening.
There are some (many, I'm afraid) cases of true abuse, (and this blog is not meant to take those lightly by any means). But there are many of these false accusations and beliefs that are caused by dementia delusions. And the patient's firm belief that they are real.
Remember the old TV show "Lost in Space"? Living with a dementia sufferer kind of feels like that sometimes doesn't it? If you follow my support group blog, I try not to duplicate information. We have talked about (on the support group blog) safety issues, multiple safety issues. However, as my safety and dementia travel led me to the kitchen (the second most dangerous room in the house) there were so many things to cover I didn't think my short support group blog could hold them all!
The kitchen isn't considered a dangerous place for adults, however, the unusual behavior that accompanies dementia makes anticipating sources of trouble in the kitchen a monumental task! Observe your loved one carefully in the kitchen. Nighttime visits to the kitchen can often be a concern, so we want to think about safety and organization. The kitchen is a gathering room, where your family may have often spent much time so we want it to be safe for as long as possible, not off limits to them.
Dementia patients can be hard to deal with. Hard like a diamond. And they can cut too. Some of the things they say, of course, they don't mean, but still. It cuts. But they can shine too. You live for those moments when they are shining and you can see that glimmer, that sparkle of who they once were.
When you are caring for someone, you can feel isolated and alone. There are over 16 million people in the US caring for someone in their homes with Dementia, but when you are overwhelmed and exhausted by all your responsibilities it can feel like you are the only person dealing with so much.
You need support. Someone who understands, who has been through or is going through the same situations you are now. Someone who understands. You love the person you are caring for! But sometimes, they can make you so frustrated!
It's a hard decision. Your loved one has loved and cared for you all your life. Let's face it, there is a "stigma" attached to an Adult Day Care facility that makes you feel like it equals; "babysitting your loved one because you don't want to do it yourself". You feel like you are going to drop them off and drive away, leaving them all alone. The guilt and sadness can be overwhelming!
The sad truth is, caring for them at home can become dangerous or nearly impossible. Your loved one is not a child that can be put down for a nap, or put in "time-out" and the role reversal can be overwhelming sometimes, especially if it is your parent you are caring for. Likewise for a spouse, because you are now in the role of taking care of "everything" that you used to do as a team! It can just be too much to handle sometimes and for spouses, you feel the "burden" of "handling" things so your children won't have to! You feel like, you took the vows, so now it's your "job" to do it all.
Everyone assumes. We hear the stories, it's always the fault of the elderly or a teenager, right? A teenager is texting or going too fast or the elderly hits the accelerator thinking it's the brake pedal or goes into reverse by accident and hits someone. An unsafe driver can kill or injure themselves but can also endanger other drivers and/or pedestrians.
On the other hand, driving helps older adults stay mobile and independent. Older drivers have (according to statistics) better, safer driving records than their younger counterparts...up to a point. Then, older drivers can become much more dangerous.
When it comes to a loved one's healthcare, the law is very strict about who can receive status updates, participate in conversations with medical professionals and make medical decisions. Of course, these policies are meant to protect our sensitive information, but they can also cause problems for family caregivers. Just because you are family doesn't always give you the right to "be in the know".
So what does a caregiver need to be able to have the ability to make decisions on their loved one's behalf if need be? Well, first of all, the best thing to do would be to get the permissions established BEFORE they're needed in order for them to be the most effective. Unfortunately, many families don't realize that any special paperwork is required for them to take over their loved one's care. Being unprepared can be stressful for everyone involved...
Are Adult Day Services right for you and your loved one? Well, there are questions each of us has to ask to determine that. Adult Day Service is NOT a place to leave your loved one, where they will be "ignored all day" until you return. It IS a place where your loved one will be loved and cared for until you can pick them up or have them picked up. We will get to those questions in a second...
So, we know enough to be aware that, as of now, there is no cure for Dementia. There is no stopping it, no slowing it down. So what is the point? What possible difference can it make to KNOW for sure?
No one wants to admit that they or someone they care about could have such a devastating condition and even though you're worried, you might think it's useless to get a diagnosis because there's no cure. But ignoring it isn't going to make it go away. There are important reasons you NEED to know.
If someone you love is experiencing cognitive challenges or acting strangely, and maybe they are an older adult it can be natural to think it COULD be dementia of some sort. After all, that happens a lot to older people, right?
Never assume and jump to conclusions because there are many TREATABLE diseases actually can mimic dementia! That's why it is essential to see a doctor as soon as possible when you realize there's a problem. There could be something going on that could be treated relatively easily. It's important to get the proper diagnosis and treatment.
Frontotemporal dementia or FTD is the 5th most common cause of dementia. It's also referred to as frontal lobe dementia and tends to start at younger ages... It often occurs between the ages of 45 and 65, but can also start as early as age 20! It's estimated that there are approximately 60,000 people living with FTD in the US.
Parkinson’s disease is a neurological disorder. It's a progressive disorder of the nervous system that affects movement. It develops gradually, usually starting with barely noticeable hand tremors. About 50 – 80% of people with Parkinson’s develop Parkinson’s disease dementia, but the dementia symptoms usually several years to appear.
Lewy Body Dementia is a progressive, degenerative brain disease. It's the 3rd most common type of dementia, after Alzheimer's and Vascular dementia. It can be a confusing type of dementia because it has some symptoms similar to Alzheimer's (except the loss of short term memory) AND symptoms similar to Parkinson's disease.
It's called Lewy body dementia because of clumps of protein found in the brain called Lewy bodies. When they build up, they cause problems with the way the brain works, including memory, movement, thinking skills, mood, and behavior.
Vascular Dementia is the second most common cause of dementia after Alzheimer's. Vascular dementia causes problems with judgment, reasoning, and memory. They can appear suddenly or they could be mild and worsen over time. To complicate matters, Vascular dementia can occur along WITH Alzheimer's, which can make it a challenge to diagnose...
First of all, Alzheimer's is a disease, NOT a normal part of aging. Alzheimer's disease IS the most common form of dementia, and it causes around 60-70% of all dementia cases. Let me give you some facts. It is the 6th leading cause of death in the US. Every 65 seconds someone in the US develops this disease. Between 2000 and 2017 deaths from heart disease have decreased 9% while deaths from Alzheimer's have INCREASED 145%. More than 16 million Americans provide UNPAID care for people with Alzheimer's or other Dementia's. We are here for them.
Stress has different symptoms for different people. It could cause changes in behavior or emotion. A normally calm, patient person may become irritable or weepy when things go wrong. A usually neat person may become disorganized when things go wrong and trust me...things will go wrong.
So you've gotten your loved one to the doctor's office and have a confirmation of the dreaded news... Dementia. Well, they may tell you which type doesn't really matter because they are all treated basically the same...medically. But for the caregiver, there IS a difference. Knowing what it is you are dealing with makes living with it, day in and day out, a little bit easier.
We all do those things, right? "Where did I park?" "Where did I leave my keys?" "I picked up milk, right?" "Where did I leave the kids?" Ha! Got you there, maybe not the kids... But we all forget things, maybe more so as we get older, but that's normal! It happens! Don't panic! Sometimes it's easier to see in others than in yourself. Maybe a loved one especially because you are used to their habits. You KNOW when things are "off". Maybe you ask yourself, what specifically you should be looking for?
What is Dementia?
Not too long ago, this seemed like an easy question! The answer was -something all old people eventually get. Boy was I wrong! Until you live with it, until it comes to your house you have no idea.