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Understanding the Dementia Experience, by Jennifer Ghent-Fuller
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
Don't expect to do this alone; it's too much for one human being to undertake. Consider Memory Care Assisted Living when the burden becomes too much for you.
Watch Teepa Snow videos on YouTube to learn how to bathe your mother when she becomes obstinate and refuses to, if that time should come.
Check out the Alz.org website for more tips.
Hire help to come into the home as needed.
There is a reason people are telling you to not do this. Hundreds of people on this board thought they could do home care too, and now they are exhausted, broken mentally (and physically) and wish someone had warned them.
-Any sort of schedule you have now will be out the window.
-Can you lift her every day?
-You may need an aide. Are you okay with workers (strangers) in your house?
-Can you handle multiple toilet visits, butt wiping, diarrhea, bed urine, and getting her undressed/dressed? Multiple times a day, and night too? She may not be incontinent now, but it’s likely going to happen.
-Are you able to help bathing?
-Are your toilets, bathtubs, etc handicap-ready? Will her bed have safety rails? Are meds stored safely?
-There will be no more dinners out, no vacations. Friends and family will say to call if you need anything, but you'll find almost none will volunteer to stay with her if you want or need time out.
-When do you plan to get things like errands and grocery shopping done? She cannot be left alone.
-If she worsens, how will you handle the medical needs?
- If she keeps you up at night, how do you plan to handle work the next day? Same goes for working from home.
- If you get sick, injured, or compromised, what plan do you have for her care?
- If you are no longer able to care for her, how will you get her into memory care or a nursing home?
I've said before that people think they can "love their way" through caregiving. That love will be enough to sustain their energy and will. It isn't. Most on here loved their elder dearly and wanted to care for them. They had to place their elder to save both of their lives.
And yes, 101 is quite elderly, but I know of someone who made it to 106. It’s not as uncommon as it used to be! Can you do this for several years?
If you're bound and determined to move her to your house, certainly no one can stop you. Just go into this with open eyes and KNOW what you are taking on.
If she has been comfortable in her IL setting, she will transition much more easily to an AL than to your home. I very rarely rely on broad generalizations, but this is true.
If she has access to a step up from AL to Memory Care, all the better.
Your own adjustment starts with realizing that this vile lousy ruinous disease is ALWAYS progressive and fatal. No way to avoid that. You will enjoy the flashes of “who she was” all the more if you see them as little miracles and not “becoming her old self again”.
I think it’s also fairly safe to observe that no two dementia patients will react the same way to anything. Stages are VERY GENERAL.
Yes, do all the research you can. Yes, make decisions forger based on your love for her and YOUR WELFARE.
Know that you will not ALWAYS have a “good” choice, so you will need to e ready to lovingly make the best of the bad ones.
Welcome. You will always find someone here who will “listen”.
The book The 36 Hour Day by Nancy L. Mace and Peter Rabins is a great resource, along with Teepa Snow who has a lot of great videos on YouTube and has also written several good books about it, like Understanding the Changing Brain and Dementia Caregiver Guide to name a few.
It sounds like your mother is living in an assisted living facility now, but as she gets worse(and she will)she will more than likely have to be placed in a memory care unit.
The most important thing I have learned is to just meet them where they're at, as their reality is not ours and it will do you no good to try and bring them into your reality. Instead you must meet them in theirs. Your life will be much easier when you do that.
I would also recommend finding a local caregiver support group to join either in person or on Zoom, as that has been invaluable to me.
Knowledge is key when dealing with this disease, so the more you can learn about it, the better off you will be.
Wishing you and your mother the very best.
There are so many good resources on the Internet and through Facebook that I have found very helpful and informative. Talking to others who are going through this is so important. I was fortunate to work at a facility a few summers ago that had a memory care unit. I learned so much about it then.
I have learned to "go with the flow" with Mom. I never mind her asking me the same question a thousand times. I try to enjoy simple moments with her, like sitting outside on the patio or watching a movie even though she doesn't really fully understand what is going on. Bath times and getting dressed are among my favorite times with her because she usually laughs, and it is fun.
I wish you the best of luck in this incredible and extremely painful journey. There are some wonderful videos on youtube that are extremely informative.
Good caregivers need all the help, access to all resources available, and the sooner you get different respite involved the better.
Have plan A and B, what if you are unable to do it and what when disease becomes worse.
I hope you are financially savvy as expenses will increase.
Dementia is 24/7 care. Do you work? If so, do not quit your job to care for her. You have to consider you future earnings with SS. The longer you work the more quarters you earn. As I said on another post, SS only looks back 35yrs from the day u apply for SS. My ex was, if you wait and collect ur SS at 67 but you quit working at 57, your SS is caculated on 25 yrs of years. Won't give you much to help u live on.
People tend to think caring for parent is the noble thing to do...there is so much more to it. And you are the youngest what about your other siblings, are they willing to do what needs to be done to care for Mom?
There are options. Consider them first.