Mom in early stages of dementia- am I able to handle this on my own?

MRSCBS123 -

You sound like you are handling things very well.

Who diagnosed your mother? Has she been seen by a neurologist? The first thing to worry about with dementia is to be sure it's not caused by a treatable condition, like low thyroid or low B12. If she could recover and stop going down hill, you want to know that!

I don't know how they decide how much testing to do. My husband was 67 when diagnosed, which is a little young. He had a full Neurological Psychological evaluation at a major hospital, and an MRI and I forget what else. After a painful amount of memory and functioning tests, they said it was dementia of the Alzheimer's type.

We are close to the city, and we have very good insurance, so that may be why we got the full treatment. Also, they may feel that your mother seems to have typical Alzheimer's symptoms, and that no more testing is needed.

You might try to get your mother seen by a geriatrician, who specializes in the care of the elderly. As I understand it, they consider the patient and their abilities, more than any specific parts, and make very practical recommendations. Good luck!

Hi there, this is my first time posting a response. I say hello to all of you who take time to write and answer questions. I, too, am a fairly new caregiver. My husband and I just celebrated one year of my mom's residing with us. There have been many, many, many, adjustments and truly I know that it is the grace of God that has strengthened me to do this. Wow, where do I begin. We relocated my mom from another state as well. She has adjusted very well. I do not have the problem with the hearing, but I am dealing with early dementia along with other chronic illnesses, e.g. Parkinson's, diabetes, cervical dystonia, etc. I read in one of the comments about getting knowledge on dementia, esp. the kind of dementia a person has. How do you do that? Do you talk to a neurologist? Her diagnosis has been based off of memory tests only. Are there other kinds of tests that can determine what kind of dementia one has? But back to Flutter's concerns - I concur with all of the comments written and would like to encourage you to seek help when and where you can for your own sanity. I keep hearing about caregiver's stress which is REAL. You have to somehow find time to focus on you, because if your health goes down hill then who will take care of mom. Please do not ignore your health - make sure you stay on top of your annual physicals and pay attention to your body. When you are tired, try to get some rest. One of the things I did was put a baby monitor in my mother's room. I now know her movements in the middle of the night - whether it's a bathroom run or if she is getting up to start a new day in the middle of the night. Because I know she is not at the stage of wandering (thank God) I will turn the monitor off in my room so that I can get the proper sleep. In the beginning, I would jump up at her every move. I figure even if she is up taking her wash off and making her bed in the wee morning hours, it can't hurt. But for me to try to convince her to go back to bed when she is sundowning was wearing me out and I wasn't getting any rest; therefore, when it was time for me to get up to go to work and to assist her in getting ready, I found myself very cranky. My mother goes to an adult daycare 4x's a week which is a blessing for me. She is excited in going because of the activities, field trip and the socialization that she has. The Director of the Center told me last week that she has many buddies there and it made me very happy to know that she looks forward to going to just hang out with her buddies. Stay encouraged. The most important thing that I have learned in caring for my mom is to keep her in a routine. I can go on and on but just wanted to let you know there will truly be good days and bad days. I pray you have more good days! ATL

We just handle what we have to. If you were asked before your Mom was diagnosed could you manage this-you might have said no way! I know I would have. My Mom is 85 and was just diagnosed with "memory loss" last summer. I knew for about 2 years things were misfiring. Anyway she lives independantly with my mentally handicapped sister about 30 min from me. In the last year she doesn't drive anymore and pretty much just wants to stay in her condo. I go there 2-3 times a week and started having a caregiver come in M-F for 4 hours. She insists she is fine and doesn't need any help etc and I have to deal with occasional rantings about how we (I have another sister too ,that is involved in care) think she's stupid and are bossing her around because she's old.I know we are doing the right thing and I know this will progress but all the dynamics are sometimes overwhelming. I want to give her as much freedom that is safe but knowing when to move forward is the toughy. Mom doesn't have any unsafe,bizarre behavior-she seems to know her limitations etc. This is so hard to watch a parent slowly age away.....

Great inspiration from all of you. I did get certified but I'm with you msdaizy, social worker end sounds more appealing right now. I have gone back to the nursing home though a few times already.One of the residents became close to mom. She would sit with her for meals and she would make sure she "watched over mom". Margie is 95 and mom was 95. They would be sitting watching the fish in the aquarium when I would go to see mom. Margie took it hard when mom passed. My mom told me Margie lost her husband and they never had any children. She only has a nephew who lives out of state. I was at the nursing home nearly every day, and I could see no one ever visited her. So, I've made it my plan to stop by and see her at least once or twice a week. I gave her some of mom's things and a picture of us she has in her room. She is so thankful and appreciative for the visist. Then I stroke her soft hands and tell her how much they remind me of mom's. She told me yesterday she knows she can't replace my mom, but she views me as a daughter. It feels good to give a little of my time to someone who is so lonely. I know eventually I'll have to get back in the workforce, but for the next few months I know this will help me heal, and once I go back to work, I'm still going to keep visiting my new friend.

Good job Rusty and Flutter...that's wonderful. I have even pushed around the idea myself. Hospice were like angels to me. I don't know how I could have done it myself. It's a great service you both are doing. Mom was only with me for not quite 6 months, but I feel like I learned so much about the disease that I could even do something in those lines too...just not sure where to start. Not sure if I would like to get my CNA...but I would like to check into maybe the social worker end. Flutter...learn as much as you can. It will make things a whole lot easier. God Bless you both.

My husband and I signed up for a 5 week seminar on Alzheimer/Dementia. Tonight we learned about communication. Very informative. We learned that we are doing some things correctly and what an eye opener on things we can do better as we take this journey. Glad we are learning all this ahead of the game.

I'm in hopes of getting my CNA certificate and hopefully working for hospice. I would love to give back to someone the care and love that was shown to my mom from Hospice. If it wasn't for them, I would not have been able to keep her home. Thank you Hospice! Love all of you that took care of mom.

Rusty you have my deepest sympathy. Msdaizy and I know exactly what you are going through. My mom passed away Jan 1, 2013. She had just been diagnosed with Lewy Body in October.
Flutter: I had my mom for 32 years. The dr. told me she had mild dementia about 3 yrs ago. She would say things like your mom said, but then it would be fine. I knew she really loved me and she knew I really loved her. No help from my sibling either. I kept her at home for as long as I could. The past 3 years were getting harder and after a fall (and a short stay on hospice) I found out I could get some help from our County. I live in IL., and contacted Senior Services. She qualified for someone to come in a few days which was such a relief for me. Even tho she lived with me the service is provided for her living space. In our case mom had the whole lower level, which was a family room, bath and bedroom and a room we converted into a kitchen. If you can get any time of help from your state or county, I can only tell you it helped me tremendously. It gave me a chance to get out, or to have the girl take my mom out. (she always wanted to go grocery shopping!). It also helped keep any frustration down, since I knew it was building, especially since my sister didn't help much, but that was because my mom didn't want her, she only wanted me.
Now that mom is gone, I am proud to be the one she wanted, even if it was a little harder on me. I am the one who has no regrets. Get help if you can. If you can't deal with your mom in your home, perhaps she can be in assisted living near you. Something to check out.

Wow Rusty, exactly the same here. My mom had LBD and passed away on Jan 9th. It was such a hard journey with mom...I hear that for sure. But I am so glad I didn't give up on her. She was the sweetest mom around..the dementia made her so different. It hurt. But after knowing that it was just the disease made it easier for me to stick it out. I'm sorry for your loss..I feel the pain of losing my mom. It's getting better everyday. But there is still that emptiness there. LBD was horrible I hate how it took my mom away. God Bless you.

Rusty, sorry for your loss.

I know what your talking about. My mom was deaf, couldn't see, wouldn't walk had kidney failure, had louie body from parkinson's and demintia . The combination fo the demintia and the Louie body is horribel, let alone just one of them. You need to find some way of getting help, even if it's just an hour a day . Can you get a gould assesment done on her to get more help. My mom just passed Jan 9, 2013 and I was caring for her till she took her last breath and I am so thankful that I could do this. At times I wanted to just pull my hair out of call it quits. It's a very hard job to do , I had no choice. i finally got hospice help and had them every day to dress bath and lift her for me. It was only for 1 hour but that gave me an hour to do something I needed to do. You have a long hard road ahead of you but there is help out there, it's just hard to find. God Bless and Hugs

Momhouseme, Mom lived in CA and my two sisters were not visiting mom and her rent was increasing monthly on her apt. More going out than income. I live in SC, was more feasible and I missed her.
Great suggestion on safe place. Thanks.

were you estranged from your mom as you mentioned locating her. instead of the house being your sanctuuary make your bedroom or a home office your safe place. good luck to you.

sassywonder, make sure your mom is getting social interaction during the day, whether with friends or at an adult day-care center. very important!

I know how you feel. My Mom moved in with me about 6 years ago and over the last year she was diagnosed with early dementia. Most of the time she is fine, but I can see the future coming. I am single and work full time with a high stress job. I have decided I need to do little special things for myself. So tonight I went and had a manicure done. It sure felt great and I know it is something I need to do for myself in the future. I don't want to get to a point of regretting Mom or being anger at her. She does so much for me and I want to help her ward off this disease as long as we can. She loves to play puzzles and we purchased some books with games. She likes to watch National Geograpic and when I get home we talk about what she watch during the day. Anyone have any other suggestions.

Momhouse, I had to laugh at your sanctuary as I also use my bedroom. I have a lock on the door and anything personal we own is in here and thank God I have a small bathroom. When my cna comes to bathe Mom if I didn't get up early enough to shower, I end up bathing myself like martha washington until the evening comes, what we put up with huh? I only have one cna who is responsible and can lift Mom and when she is out, and she is off weekends, its tough. She comes in for 1.5 to 3 hours only but man do I love it. I never bought babyfood but do puree Moms foods ahead (for hours) once a week or so and freeze it all in little containers for her. Take Care. RR
Shortstuff33, sorry about your grandfather, my Mom did the same thing 5 years ago and broke her hip, they lose their reasoning even though they can convince otherwise in the beginning stages.

This is the first New Year's that I started to cry at 11:59 until I fell asleep. My grandfather is 88 and was diagnosed with dimentia. He walked out of the apartment at 2:30 a.m. in the cold and fell. Thank God someone saw him. He is now in a long term facility. I have my grandmother about 2 blocks from us, but is more stable than him. I promised myself I would never put them in a nursing home, but realized he is safer there. At least one of our family members goes once a day to check on him. My suggestion is start checking out facilities close to you, where you can still take them home, but have the peace to know that they are safe. My heart hurts worse for grannie, she misses him. Good Luck, but start thinking of long-term care.

our dollar store had individual size creamers that did not require refrigeration; they are good to about 4 -6 cups of coffee/tea depending upon how much cream one uses. great to keep on hand.

alot of canned/packaged discussion; when i did cook i made extra so mom could have the leftover for lunch while i was at work, or for the week end so i wouldn't have to make a full meal after working all week. 1 family size meatloaf and one baby meatloaf for leftovers for mom. mac and cheese freezes great as does meatloaf. if we had chinese for example i would get an extra container of something to go; that would be moms lunch or our dinner when i got home from work. Fresh choice; many of us can't eat enough food to really say we got our monies worth, at least i can't. when mom and i go there i explain that to them about mom and they allow me to buy her the childrens meal; mom would never be able to eat all of their buffet items. great restaurant because there is so much variety!

a sentance or two got omitted; horizon organic milk is sold in stores and starbucks; they are a single serving milk (some just plain milk, but also vanilla and chocolate). they do not need to be refrigerated so if we ever did run out of milk i had these on hand and they are the real deal. and good tasting and you can use for baking also.

i figured that baby food fruits were healthier than canned fruits...;also they came in small portions so all of it (the particular jar or container) was used. I could also mix her crushed meds with it if needed. they are also good for a snack if you go on a road trip and you don't have the real thing in stock at home. they keep a long time so i didn't have to worry about them expiring. baby juice drinks also just the right portion for lunch or even dinner i save the drink containers (plastic) for filling when we went on a road trip or picnic; much healthier i presumed than adult juices; even their teething bisquits were a quick cookie for a treat. all good. (mom also needed a weekly regimin of baby fruit prunes). oh their peach fruit is delightful when poured over ham or pork chops...mom got flavor and the benkuff or the old kind in the can used for baking. Most grocery stores carry them along with chocolate. I don't chill them until i will need them. 7-11 makes their own brand of twinkies (so does another company) which is great when I want to serve mom cake; i don't have to buy an entire cake for her to get a cake for two days. i always have hot cocoa in envelopes on hand as well as green tea bags, camomille and one called sleeping something. in the summer i guy arizona green tea or make tea from the bags. marie calendars makes the most deliscious fettuchini alfredo (frozen) and it comes with one slice of garlic bread. the perfect meal. add a baby fruit and/or a baby vegetable and dinner is ready. My mom was a good camper and never complained. i buy small things so that we dont have a whole leftover cake. doing so allows me to provide a variety throughout the 2 weeks for mom. lots of low salt healthy canned soups that mom likes; soup and a quick sandwich with something on the side, viola dinner/lunch. pudding cups and jello cups on hand always in case the twinkies or other desserts are gone. just the right portion and they don't require refrigeration. instead of a gallon of ice cream they have very small single serving conainers of a certain brand; takes up less space in freezer and is a nice variation; if i was at rite aid i would get a single serving of icecream in a container and freeze it. i always bought a food item if i went to a drug store or other. molly stones has the best macaroni salad which mom loves. baked potatoes. the potatoes keep for a while and a single potato can be a meal...top with butter or sour cream, pes or corn with a side of.....and dinner. mom loves baked potato dinners. we grilled alot of mean in the george forman grill; only one grill got dirty so no stove cleaning/spattering. i also keep every cold/flu remedy on hand in a zip lock bag so i don't have to run to the drug store if mom gets sick. i just monitor expiration dates which i don't have to do too often. I use childrens brands for mom since many adult brands can adversely affect the elderly esp if they have dementia/alzheimer's. stores also offer fruit cups that also don't require refrigeration. often they pudding, jello and fruit cups go on sale for $1. dollar store sells them here in CA as well.

Hi Momhouse --That was a lot of good Detailed information. You mentioned a lot of things that I wished I knew of with mom's situation years ago. I do remember buying baby food but I never thought to warm it up. Yeah, I did the TV in the bedroom. Also wished that I could have afford a mini fridge but...money was tight. A lot of useful tips.

i would suggest everything that has been mentioned. I am single, worked full time, had a caregiver while i worked, then came home and took over as well as taking care of week=ends. i reached burn out because in the early stages mom wanted to go places since i was gone so much during the week; then there was the wash, groceries etc. Do get medical and financial poa immediately, whether she lives with you or not. you will need both down the road probably. have a back up poa in the event you are not capable (hospitalization etc). write down everything that has been said; each thought be a subject then add below the subject your ideas. Here are a few things that helped me. when mom didn't need the caregiver i had a thermos that held hot food for up to 7 hours. i would prepare a hot lunch for her often and she used this. i had"word searches and matching games for mom.
as i started falling behind i started buying enough clothes for mom so that I never had to wash. This included pj's. i have clothes for 2 weeks as well as towels and sheets. .
Food: I buy and store alot of foods. since milk, eggs, cheese etc expires (mostly milk) I had stocked up on everything else; doubles of everything. that way i could zip into a 7-11 store to get more milk but i had enough food for 2 weeks. Lots of pasta, frozen sauce (back up in jar), several frozen meals, lots of canned varieties of fruits, puddings, jello. the first week was a healther week with fresh vegys and as the 1st week went on and we were running out i just relied on frozen or canned vegys. I had a variety of juices for mom to drink. remember i had to plan for mom's lunches as well as our dinners. on week-ends i had to have supplies for the picnics/outings we went on. I stored most of the extra canned items (and a jello pack that does not require refrigeration) in a special drawer in my room. i could always look in the drawer to know what back ups i had. mom loves bananas so when we ran out of bananas (along with the milk) i would give her baby food bananas served on a plate with her dinner. we only had to do this for a day or so because eventually i'd stop on my way to work and grab a new bunch.
I used alot of baby fruit so if we ran out of the real thing. sometimes those fruits when warmed well changed the taste of a porkchop (applesauce). If there had been a disaster, my house would be the place to be in terms of food. when the main foods got used up, i could go to the back ups and just keep rotating. baby food was a lifesaver; mom loved them. some of the graduate entries made good hot lunches if i needed somethhing quick. this house also had backs up of toilet paper and other paper goods, light bulbs. Therefore in short, I was so exhausted from work I could have not gone to the store frequently. there is a great shower chair; part of it goes over the tub so that the patient sits on that part, then brings their legs over the tub to sit on the tub portion of the chair so mom didn't have to stand up to get in the shower. then as she proressed there is a shower chair which is more like a commode chair without the holder that holds the pee and poop that mom can sit on so i can wash her private parts.....when u purchase these items keep you receipe because not all shower chairs fit in all bathtubs.
you will lose privacy. therefore i set up my bedroom as a small sanctuary. i even had a small coffee pot in there; when i planned to go inside i would pull the cream out of the fridge and retreat to my room (this was if there was a caregiver entertaining mom in the afternoon) because when i got respite i didn't always want to leave home. i suggest getting a television for your bedroom for you and your husband.
if your m0m likes certain magazines get a subscription for her. I had alot of dvd's that mom loved so i could have them play for her to watch (over and over again) so i could get paperwork done.

the key i believe is an abundance of patience,, organization and regular resite. by the time i figured out respite i was so tired that i would retreat to my room and sleep for 3 hours;;;not productive but i needed the sleep. the caregiver would be overseeing mom and then the caregiver would make a simple dinner so when i woke up there was food for me that i didn't have to cook!

I will tell you for me...Mom was in the latter stages of dementia, I brought her home with me in July. We have Hospice now. Check with any Area of Aging and Disabilities in your area...get help if you can. When you are offered respite, take it you will need it. I didn't sign up right away...thought I could do it all on my own. Truth is this is the hardest thing I have ever done in my life. If you have any oppurtunities for any government programs in your area take up the offers. Dementia is a cruel disease, it will change your mom. And if you are not prepared for it, it will make you resent her. But remember also that it's the disease and she has no control over it. Learn as much as you can about dementia and how to handle situations. It will benefit you to educate yourself. And when you need to vent...you have a forum full of people that feel your pain. Ask questions...cry...scream...let it out. We are here to listen. Most importantly...take care of you! You cannot care for anyone if you don't take care of you first. God Bless.

Mattie; why will it be the end of your marriage? And what does what your mom's "friends" say have to do with what you decide is best for you, your mom and your marriage?

Bookworm, we get our laughs where we can.

Notwell-- I laughed at your story with sis. I felt bad for laughing but...you are soooo right. The only way our siblings will understand what we go through - is to let them watch 24hrs non-stop. Deal with the repeating, the demands, etc...of our parent. Thank you for the laugh! .... I also liked your solution with your father to mlface.

mlface - I found a solution, for us, for needing to be away from my father and him getting upset about it. Maybe it will work for you. I blew up a picture of my mother and made an 8x10 sign telling Daddy we had to go out shopping. It tells him we love him & will be back soon. I put it in a binder with one of those clear pockets on the front. The sign says "________ is staying with you until we get back". Then I write the name of whoever is staying with him in the blank on the plastic with a dry erase marker. Before we leave, I stand the binder up on end within his eye sight. That way it is a constant reminder to him that we are gone, will be back, he is loved and there is someone there to take care of him.

Suggestion for dealing with the sisters. Ask them to come once every 6 months (separately) to give you a break. They will see what you are doing and will learn all you have given up to make their lives easier. (We won't tell them of the satisfying things. That is our secret.) My sister lives out of state. I am very fortunate. She is wonderful and always there for me, even when I call just to gripe. One week she came over here when I got sick. 1 day in and I got a call. She was almost in tears and was apologizing. She said "I can't even do 1 day". I just started laughing. She sounded so miserable. Maybe it is that one gets used to everything when it is a daily thing, but people new to the situation are overwhelmed. Getting a taste of the real life will generally shut "kibitzers" up.
Take care of yourself and good luck.

mattie, continue to take care of her finances. Find her an excellent Assisted Living Facility, preferably one that also has a memory care unit that she can transition to if the need arises. Visit her often -- daily if possible. Take her on occasional outings. Be her advocate. See that she has the best care the facility can provide. Resolve all issues as they arise.

There is more than one way to honor your mother and take care of her. In your situation I don't think it is under your roof.