Welcome to the forum! I can tell you firsthand that dementia is a VERY difficult thing to handle alone at home. When it becomes advanced, it can be impossible to handle and you'll need to have Plan B & Plan C mapped out for when you can't manage mom anymore (if that happens). I, for one, could never manage my mother at home; she had way too many issues to deal with; she was incontinent, wheelchair bound, had CHF, aFIB, neuropathy, just a ton of things that I am not equipped or trained to handle. She needed a team of people working 24/7 to manage her needs, honestly, so she lived in Memory Care Assisted Living when her dementia combined with mobility issues became unmanageable in regular Assisted Living. She lived in MC for almost 3 years before she passed away last month, under hospice care.
Only YOU know how much you can handle and when it's time to cry Uncle. Nobody else can tell you when to say Enough. You may be the type who can go on for years dealing with mom, or, you may burn out next month. Just know that there's no crime and no 'sin' in saying you can't handle this, and getting mom placed in Memory Care or in Skilled Nursing where a team of people will oversee her care. Don't fall into a trap where 'only you should be' responsible for her, 24/7. Burnout and compassion fatigue are VERY real, and stress is a killer.
Here is a great 33 page ebook to read on the subject of dementia:
Understanding the Dementia Experience, by Jennifer Ghent-Fuller https://www.smashwords.com/books/view/210580
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's” · Do not reason and argue · Do not demand that they reason or problem-solve · Do not demand that they remember · Do not demand that they get their facts straight · Do not correct their ideas or scold them · Do not reorient them · Do not think that they are being uncooperative on purpose · Do not think that they really do remember, but are pretending not to · Do not use a “bossy” dictatorial attitude in care · Do not act with impatience
The Do's · Enter into their frame of reality, or their 'world' · Be aware of their mood or state of mind · Use few words and simple phrases · OR use no words, just friendly gestures and simple motions · Do everything slowly · Approach from the front · Wait for a slow response · Constantly reassure them that everything is 'OK' · Keep people with dementia comfortable 'in the moment' - every moment · Maximize use of remaining abilities · Limit TV or radio programs which they may feel are frighteningly real · Maintain privacy · Provide a safe physical environment
Language Needs · Use short words · Use clear and simple sentences · Speak slowly and calmly · Questions should ask for a “yes” or “no” answer · Talk about one thing at a time · Talk about concrete things; not abstract ideas · Use common phrases · Always say what you are doing · If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information · Wait patiently for a response · Be accepting of inappropriate answers and nonsense words · Speak softly, soothingly and gently
Care Needs · Recognize that receiving personal care feels intrusive · Reassure with your tone and manner · Do one thing at a time · Talk through the care “play-by- play” · Be aware of your body language and use it to communicate relaxation and reassurance · Be sincere · Use a soft, soothing touch · Be aware of the individual’s unique triggers · Be aware that a person with dementia may not accurately judge whether a situation is threatening to them · They may respond to fear, pain or anxiety by defending themselves with what we call “aggression” · If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
Thank you for the support. I wasn't coping well that evening (late evenings are the only time I have to myself to write.) I felt more hopeful reading your responses. It just make things easier knowing people are supportive and there are some solutions to make life easier. Thank you
Dementia is an incurable brain disease that kills the person long before they stop breathing. Currently, the only medicines available just delay somewhat the final outcome. In other words, they make the horrible journey to their death a little longer. Many well-intentioned care givers try the outmost to prolong the miserable end of their sick relative thinking that it's the "right" thing to do. Eventually, when death finally occurs or even before, they are angry, frustrated, guilt ridden, burn out and poorer, because caring for a hopeless demented person is insanely expensive in the U.S. Of course, To each its own. I'm just thinking aloud.
Slo302003, learn everything you can about dementia, then it will give you a better understand why Mom may be doing different things. Oh, one thing to do is have Mom checked for an Urinary Tract Infection [UTI] which can mimic dementia.
On the blue/green bar at the top of the page, far right, click on CARE TOPICS, go to the "D" section and read everything you can if it turns out Mom actually does have dementia. Grief can be devastating for a spouse and the rest of the family, and that could also cloud her mind.
Being a member of this forum can help you with questions where you can't find the immediate answers that you need. This forum was so helpful for me when later down the road my parents had developed memory loss.
I am sorry for the loss of your dad and equally for your moms dementia. This is very hard for you. Do you have your moms POA?
Frequent breaks and planned respite can go a long way in keeping your own sanity. As Mstrbill stated you will need help. As with any important work you will need to have the stamina, the acuity and the desire to see it through and not take any of it personally. You do have to enter an alternate reality so it is good for both of you to stay refreshed. Try not to isolate.
Try to have a touch stone to measure where she is in her dementia and where you are in supporting that.
You can use something as simple as a referral to the ADLs or the IADLs on a regular basis. This guide helps me take stock of just which activities are needing help and what the goal is on shoring that deficient up.
How old is your mom? Her bio says 51. So I am guessing that’s your age and that mom is in her mid 70s at most? If I’m close just know that your mom can live a long time depending on her comorbidity and you are possibly stepping away from your own productive years of work.
So you must pace yourself and please realize that managing the care is sometimes the most of our life we can afford to offer as opposed to hands on care. Especially as we age along beside our parent and have our own retirement to plan for.
Its very hard, and only going to get harder, especially if you are doing most or all of the caregiving by yourself. Do you have help? Are you going to pay in home caregivers to come in and give you time off? Is mom mobile? If she is, it is going to be a 24/7 constant supervision situation and no one person can take on that responsibility alone. You will need people to help you, and eventually you are going to seriously contemplate placing her in a facility as your stress level rises and rises.
Only YOU know how much you can handle and when it's time to cry Uncle. Nobody else can tell you when to say Enough. You may be the type who can go on for years dealing with mom, or, you may burn out next month. Just know that there's no crime and no 'sin' in saying you can't handle this, and getting mom placed in Memory Care or in Skilled Nursing where a team of people will oversee her care. Don't fall into a trap where 'only you should be' responsible for her, 24/7. Burnout and compassion fatigue are VERY real, and stress is a killer.
Here is a great 33 page ebook to read on the subject of dementia:
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every
moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly
real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the
first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate
relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge
whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending
themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time
to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia
because the person with the disease cannot.
Best of luck with all you have on your plate.
It just make things easier knowing people are supportive and there are some solutions to make life easier.
Thank you
On the blue/green bar at the top of the page, far right, click on CARE TOPICS, go to the "D" section and read everything you can if it turns out Mom actually does have dementia. Grief can be devastating for a spouse and the rest of the family, and that could also cloud her mind.
Being a member of this forum can help you with questions where you can't find the immediate answers that you need. This forum was so helpful for me when later down the road my parents had developed memory loss.
I am sorry for the loss of your dad and equally for your moms dementia. This is very hard for you.
Do you have your moms POA?
Frequent breaks and planned respite can go a long way in keeping your own sanity. As Mstrbill stated you will need help. As with any important work you will need to have the stamina, the acuity and the desire to see it through and not take any of it personally. You do have to enter an alternate reality so it is good for both of you to stay refreshed. Try not to isolate.
Try to have a touch stone to measure where she is in her dementia and where you are in supporting that.
You can use something as simple as a referral to the ADLs or the IADLs on a regular basis. This guide helps me take stock of just which activities are needing help and what the goal is on shoring that deficient up.
How old is your mom? Her bio says 51. So I am guessing that’s your age and that mom is in her mid 70s at most? If I’m close just know that your mom can live a long time depending on her comorbidity and you are possibly stepping away from your own productive years of work.
So you must pace yourself and please realize that managing the care is sometimes the most of our life we can afford to offer as opposed to hands on care. Especially as we age along beside our parent and have our own retirement to plan for.
Good luck and welcome again.