Sandwich Generation

I truly understand your irritation regarding the lack of planning. My mom chain smoked for 30 yrs, yet had no will, no burial plan, no life insurance. Despite my repeated pleas to sit down and put together a plan. She died leaving it all to me to figure out.

I would suggest joining a support group. I've heard of an online group called Plaques and Tangles. That is geared toward caregivers of loved ones with alzhiemers.

I would also ask you to rethink your decision not to take advantage of a care facility. There are some wonderful, luxurious places where she would get excellent medical car plus the added bonus of friends. They plan activities and outings and she will be surrounded by people she can relate to and talk with. Plus dealing with a deteriorating situation may not be the healthiest environment for your daughter.

I'm sorry you are going through this.
My mother has Alzheimers and let me tell you....you really can't plan for it.
Having said that, you can plan in the event it affects you (it most likely
can). Plan for your financial needs, affairs and for your daughter.
Let me applaud you for taking care of your mother. As a nation we don't
always take care of our elders and while it's hard, they took care of us in
our youth.
Our mothers are a wealth of knowledge. I love listening to my mother's
stories.
A few things that will help you in your care & move of your mother to your
home:
-Read up on the disease first & foremost. Check out a book from the
library right away. If one book is hard to read, check out a different one.
You can even find an abridged version at your local drugstore.
Believe me.....they are insightful.
-It helps to know what stages they will go through so you can anticipate them and deal with them. It can be done.
-Hopefully your home is easy for get around in. Ex. no stairs, room on the
bottom floor, low enough bed to get into etc.
-Things that have helped us get her around: walker, wheelchair for dr appts, recliner (easy to get in & out of), several comfy chairs around the living room & one in her room, tv in her room, medicine (talk to her dr), bidet-type toilet installed---looks just like a regular toilet so not a true bidet looking type, plastic sheet under her fitted sheet in the event she loses bladder control later on, tv tray (the standing kind).
-I would bring a lot of her personal effects from home to make her room at your house feel like home. It is a very hard transition for them!
-have her friends come & visit.
-maybe frame some pictures of her travels for her room
-check into Alzheimzer groups in your area for you to learn about the disease but also they have some groups for the individual with Alzheimer to go to & hang out (my mom would have nothing to do with this but your
mom might like it).
-get a weekly medicine pill box to help keep track of her medicines later
-maybe you could set up a computer w/Skype so she could talk to her friends via Skype
-get her her favorite magazine subscription
-you can get a travel DVD player for her to watch movies (rentals) in her room
-These are some of the main things I can think of right off the bat. Feel free to pm for more questions you may have.
Don't worry....it can be done and I commend you!

Completely agree with Tracyxo. Please do consider care outside of your home. There are many facilites out there with highly qualified, trained professionals who know how to deal with the many facets of Alzheimer's disease.

I'm so sorry you are in this position... Good luck and let us know how you are doing.

Hi M.,
My Mom has Alzheimer's disease. My best advise is get help - Check out your local Agency on Aging for services and resources. Adult day care may be an option to help keep her busy and give you a break

I own a support website for caregivers of people with Alzheimer's. Please check it out and join our forum for support. Keep in mind that the site is new, we are always adding new content. If you have a specific question about Alzheimer's disease or management of symptoms feel free to email me.
The website is http://www.plaquesandtangles.com/

My step-sister cared for her mother, who had Lewy Body Dementia for about 5 years. I t was exhausting, and surprising for her.
There cane a time when she just could not care for her mom in-home any longer. When safety is the issue, it's time to look at good care facilities. A good support group was very important as well.

I've heard The Long Goodbye by Patti Davis is a very good book.

I'm sorry you & your mom are going through this.

Good luck and God bless you. My mom had to do the exact same thing. The only difference is that years ago no one knew about alzheimer's, instead they diagnosed Grandma (My mom's mom.) with hardening of the arteries and senility. Grandma lived in a BIG city too. It didn't help that when she was hallucinating, her sister told her it was ghosts and helped her turn her funiture upside down so the ghosts couldn't sit there. Grandma was brought up to our house in the country to live when I was in high school. I thought it was going to be fun and kind of cool...Wrong! She was already "gone." Grandma would wake us up every night around 2:00AM. Sometimes more than once. It was like having a baby, only the "baby" was too big to take care of. She would forget where the bathroom is; even though, it was right across from her room, and try to use my closet as a bathroom. (Pretty scare for a young teenager...I would sit up on my bed screaming for my mom.) If she didn't do that, she'd stand and sway in the hall way. We'd wake wake up and ask her if she was "ok"...She'd tell us that she's waiting for the little boy in the wheelchair to get out of her way so she can use the bathroom. (Her hallucinations were really morbid, because the invisible "children" had missing limbs and sometimes missing heads.) She would see all kinds of things that just weren't there. One time we were eating dinner and she knocked on the window from the outside to tell us she was lost and couldn't find her house. What happed was our little dog wanted to go outside to piddle. Instead of her just letting him out, she followed him out. Thank goodness the dog was smart enough to bring her back to the house instead of his traditional walk through the woods. He was trying really hard to get her to come up on the porch too! Mom tried putting her in a group home as suggested by our doctor. (He told Mom that she had to send Grandma away, because it would be too much stress on Dad since he had a heart attack.) The group home had us pick her back up after 2 weeks, because she beat up the cleaning lady because the cleaning lady denied being her sister. Grandma used to go in and out of English too. There were times she could only speak German and thought everyone else was speaking it too. We wound up calling my uncle to come and get her. She lasted 1 week there and he put her in a nursing home. I really hope you do better then we did. Sorry for the sad story.

My situation was a little different because my mother was actually a very good planner and very organized. Over the past several years, she was even trying to go through her home/basement, anticipating there may be a point she cannot live at home. (There was still a good deal of stuff for my sister and I to go through once she passed away, though :)

Still, when she became ill last year, my boys were young and I was late in my pregnancy with #3. Luckily, I had some flexibility with my work to work from home for part of the day. My sons were in daycare because of my work so I didn't have to find someone to watch them when she needed to go to the doctor or when she was in the hospital. She lived alone about 10miles away and was still pretty independent but weak; she wanted to stay in her home. My newborn daughter was a joy for the nurses and other patients at chemo, and they enjoyed watching her rapid growth. It was crazy and chaotic spending much of my time in the car between her needs, getting my sons dropped off and picked up, the baby's doctor appts and groceries/errands for my own home.

You might want to look into adult daycare centers for your mom. Is your daughter home? If you can afford it also, it would be good to send your daughter to summer camp/preschool for a few hours or days per week to ease your workload. As your mother's disease deteriorates, it will become all-consuming for you. If not actual care, she'll need to be monitored for her own safety. You may have already spent a good deal of time explaining to your daughter why her grandmother doesn't remember things. I imagine it will be hurtful and difficult for your daughter when her grandma doesn't remember who she is.

I agree with Tracyxo that you should at least look at some facilities, maybe not now but your mother's care may become too much for you to handle alone and manage your own family. (You still need to visit daily to keep them on their toes.) You can't beat yourself up over placing her in a facility if it's truly the best thing for your own health and everything you have to juggle and manage, especilly as an only child. My mother received wonderful care at a facility for her last 2wks in palliative care. She had terrible pain that "evolved," and I don't think her pain management would have been as immediate or effective even with a 24-hr caregiver.

Best of luck to you.

You will have your hands full with your mother's disease and a 4-year-old. I would let you daughter know, in a simple manner, that grandma is not the same as she used to be, and that she (grandma) needs some extra love and care. A 4-year-old will probably be very receptive to the idea, and will be sensitive to her grandmother's needs. Children your daughter's age love to help, so enlist her in your mother's care.You need to take care of yourself too, or none of this will work. Be aware of any decline in your mother's condition, and hospitalize her if she becomes a danger to herself or others. I wish you the best of luck with your new living arrangement!

K.
Licensed Teacher
Mother of two grown children & Daughter of a 78-year-old Dad

You are in for a long road ahead of you. Do you have a fenced backyard with a lock? This is for mom when she wants to go outside and forgets where she is.

How are your finances and your emotional well being? If either are questionable it is not going to work. Having mom in a home nearby might be a better fit. I say this because you are going to be pulled apart from both ends and there is not going to be a middle when mom is gone. You will not know who you are and neither will your family. I know we all want to keep our family members with us but sometimes it is not the right fit. I say this because you have a husband and a daughter that need you as much as your mom. Will you get alone time from any of them?

As a caregiver you have to have time for yourself or nothing works and you resent the world. Also the length of time that this will take is unknown and things may change a new job to be or a family membr added to the mix.

Do check out books and also groups that have information about dealing with this disease and young children. They should point you to places that will help you with your daughter and how she feels about grandma getting attention that she wants and needs and not resenting her. Please look at all the options and know what you are getting into with your eyes wide open.

I am a caregiver to my husband who has advanced prostate cancer and the doctors are doing their best to ensure that he has a good quality of life for his remaining years. I know that somewhere in time in the future he will not be here. I work to give me a break from being with him 24/7. This is my me time and it also gives us another cover of insurance for the costs of his treatments. It's not easy.

You have a big hug from me for what you are about to do.

The other S.