Dreamsend
Well-known member
- Joined
- Aug 16, 2016
- Posts
- 614
I hope I can offer some hopeful, helpful thoughts on this issue. My Mom is 98, now in the late stage of dementia and spent her life's savings (made all on her own) on 3 years of assisted living at ~$4000/mo. Just this week I had to move her to a nursing home so Medicaid could take over her care. She also wanted me to inherit and was initially most distressed about paying a "home for old folks". I'm her only family and the journey of her failing cognition has not been pleasant and it is NOT pleasant for anyone who must deal with the plethora of issues involved. I'll try to be organized.
1. Who has your Mom's durable power of attorney? If you do that's great because it certainly sounds like you should as opposed to the siblings. It must include power to make healthcare decisions. I can't stress this enough. You are headed for 100+ situations where you must make decisions on behalf of your Mom's welfare and the only way to do this is having power of attorney. Just remember, you're doing it for her welfare, not for your ego.
Do not seek guardianship unless it is a last, last, last resort to get her the care she needs. You will be entangled with the courts and forced to keep even the most mundane records of her life and have to file these with the courts.
2. If a medical doctor has not evaluated her to determine whether she needs 24 hour care, then that needs to happen. Part of that eval is to administer tests to determine where she is cognitively. Look up the MMSE test on the web to see an example. From everything you describe, your Mom is showing indications of some form of dementia -- there are a 100 types, but only 4 can be accurately diagnosed without an autopsy. Most people lump everyone into Alzheimer's, but that is incorrect and you must get professional, experienced, trained people involved in her care because they have procedures and methods for communicating with our elderly loved ones that makes life easier for everyone. Once a doctor SAID my Mom needed 24 hour medical care, she no longer was adverse to moving to AL. (At age 95). Some may well conclude that I'm making a huge unfounded assumption here, but the symptoms are there and I've seen it begin like this many times with friends' parents. I apologize if I'm out of line.
3. I have to respectfully disagree with posters suggesting you bring someone in for help so that you can get away. It is well documented that dementia patients DO NOT react at all well to changes in routine or in their environments. A stranger could mean disaster. Are they actually equipped to deal with your Mom's quirks and problems? I am pretty certain your Mom's problems are more cognitively complex than you realize, and the disease is causing her distress that her brain no longer can rationalize or deal with. A stranger can not compensate for that.
4. Dementia is a disease and it manifests differently in each person and is complicated more so because of different individual personality traits. It is progressive and incurable. There are some typical signs however and it seems to me from your post that your Mom may be showing some indications. Except for the professionals in AL, nursing homes, hospice facilities, none of us are equipped to deal with it. I've walked all the stages, taking over finances, paid the bills, done the laundry, grocery shopping, cleaning, making the doc. appt., been chauffeur, filled the pill boxes, etc. so she could remain independent. But eventually she needed a routine, stable environment with help from people who knew how to minimize her growing anxiety and to redirect her thinking. Did I feel guilty I couldn't do more? You betcha. But I couldn't/can't beat that disease, just like thousands of other caring kids can't beat it to save their parents. Getting her the support and care she needs from people who understand how to deal with the dementia beast is in her best interest. Dementia IS NOT a mental disease as in "crazy" (an awful term). In one respect, it is no different than kidney failure, or a wacky heart, or bad pancreas (diabetes) -- the organ involved is just the brain instead. But it is much more insidious and much harder to deal with because of what it does to a person and their relationships and interactions with others.
5. Get in touch with your state's local Council on Aging. In Indiana, it's called CICOA. They serve as a clearing house for all support and programs for the elderly. You will find many useful resources from caregiver support to facility reviews and hopefully free access to an Elder Law Attorney. My advice is you seek counsel from an ELA as there are financial steps you need to make sure are in place to ensure your Mom's continuing care. I only advise this because of the reference to $$ and the sibling. Is your Mom's funeral and burial prepaid? From her resources? You gotta make sure she doesn't gift anything to anyone, including charities, (varies by state) or her future care could be jeopardized. An ELA advisor is likely essential cause various requirements are very complex and you want to make sure things are the best for your Mom.
You may also connect with folks who can give you advice on how better to influence your Mom and her decisions. If dementia is present, even in early stages, rational arguments won't work anymore.
6. You are not alone. I encourage you to do some web searching -- "caring for elderly" or "what is dementia" or "elderly Mom". You'll find millions of entries. My hope is that you'll find information pertinent to your Mom's situation and that will help you make decisions for your and your family's welfare. So many, many people including me have been right where you are-- struggling with guilt and always worrying about what is the best thing to do for Mom, for your wife, for yourself etc. In the end, it almost always means living in a full-time care facility. And lest you think you are relinquishing responsibility should you decide AL is best for your Mom, I assure you, you are not. You will still find that managing her care IN a facility will likely still qualify as a part-time job. You will still be involved with many many things that need doing for her. But, you just may be able to take that rig out knowing that she is comfortable and cared for.
I hope I have not overstepped the boundaries by making these suggestions and also making some conclusions based on your original post. But your experiences mirror my own and those of numerous close friends who either have or are currently going through the same issues due to dementia. It is more than difficult to experience this, but help is available to improve things. In the end, do your best, and leave God the rest. And, remember, your best includes taking care of your own health and welfare as a priority now and then as well.
Linda
1. Who has your Mom's durable power of attorney? If you do that's great because it certainly sounds like you should as opposed to the siblings. It must include power to make healthcare decisions. I can't stress this enough. You are headed for 100+ situations where you must make decisions on behalf of your Mom's welfare and the only way to do this is having power of attorney. Just remember, you're doing it for her welfare, not for your ego.
Do not seek guardianship unless it is a last, last, last resort to get her the care she needs. You will be entangled with the courts and forced to keep even the most mundane records of her life and have to file these with the courts.
2. If a medical doctor has not evaluated her to determine whether she needs 24 hour care, then that needs to happen. Part of that eval is to administer tests to determine where she is cognitively. Look up the MMSE test on the web to see an example. From everything you describe, your Mom is showing indications of some form of dementia -- there are a 100 types, but only 4 can be accurately diagnosed without an autopsy. Most people lump everyone into Alzheimer's, but that is incorrect and you must get professional, experienced, trained people involved in her care because they have procedures and methods for communicating with our elderly loved ones that makes life easier for everyone. Once a doctor SAID my Mom needed 24 hour medical care, she no longer was adverse to moving to AL. (At age 95). Some may well conclude that I'm making a huge unfounded assumption here, but the symptoms are there and I've seen it begin like this many times with friends' parents. I apologize if I'm out of line.
3. I have to respectfully disagree with posters suggesting you bring someone in for help so that you can get away. It is well documented that dementia patients DO NOT react at all well to changes in routine or in their environments. A stranger could mean disaster. Are they actually equipped to deal with your Mom's quirks and problems? I am pretty certain your Mom's problems are more cognitively complex than you realize, and the disease is causing her distress that her brain no longer can rationalize or deal with. A stranger can not compensate for that.
4. Dementia is a disease and it manifests differently in each person and is complicated more so because of different individual personality traits. It is progressive and incurable. There are some typical signs however and it seems to me from your post that your Mom may be showing some indications. Except for the professionals in AL, nursing homes, hospice facilities, none of us are equipped to deal with it. I've walked all the stages, taking over finances, paid the bills, done the laundry, grocery shopping, cleaning, making the doc. appt., been chauffeur, filled the pill boxes, etc. so she could remain independent. But eventually she needed a routine, stable environment with help from people who knew how to minimize her growing anxiety and to redirect her thinking. Did I feel guilty I couldn't do more? You betcha. But I couldn't/can't beat that disease, just like thousands of other caring kids can't beat it to save their parents. Getting her the support and care she needs from people who understand how to deal with the dementia beast is in her best interest. Dementia IS NOT a mental disease as in "crazy" (an awful term). In one respect, it is no different than kidney failure, or a wacky heart, or bad pancreas (diabetes) -- the organ involved is just the brain instead. But it is much more insidious and much harder to deal with because of what it does to a person and their relationships and interactions with others.
5. Get in touch with your state's local Council on Aging. In Indiana, it's called CICOA. They serve as a clearing house for all support and programs for the elderly. You will find many useful resources from caregiver support to facility reviews and hopefully free access to an Elder Law Attorney. My advice is you seek counsel from an ELA as there are financial steps you need to make sure are in place to ensure your Mom's continuing care. I only advise this because of the reference to $$ and the sibling. Is your Mom's funeral and burial prepaid? From her resources? You gotta make sure she doesn't gift anything to anyone, including charities, (varies by state) or her future care could be jeopardized. An ELA advisor is likely essential cause various requirements are very complex and you want to make sure things are the best for your Mom.
You may also connect with folks who can give you advice on how better to influence your Mom and her decisions. If dementia is present, even in early stages, rational arguments won't work anymore.
6. You are not alone. I encourage you to do some web searching -- "caring for elderly" or "what is dementia" or "elderly Mom". You'll find millions of entries. My hope is that you'll find information pertinent to your Mom's situation and that will help you make decisions for your and your family's welfare. So many, many people including me have been right where you are-- struggling with guilt and always worrying about what is the best thing to do for Mom, for your wife, for yourself etc. In the end, it almost always means living in a full-time care facility. And lest you think you are relinquishing responsibility should you decide AL is best for your Mom, I assure you, you are not. You will still find that managing her care IN a facility will likely still qualify as a part-time job. You will still be involved with many many things that need doing for her. But, you just may be able to take that rig out knowing that she is comfortable and cared for.
I hope I have not overstepped the boundaries by making these suggestions and also making some conclusions based on your original post. But your experiences mirror my own and those of numerous close friends who either have or are currently going through the same issues due to dementia. It is more than difficult to experience this, but help is available to improve things. In the end, do your best, and leave God the rest. And, remember, your best includes taking care of your own health and welfare as a priority now and then as well.
Linda
