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I'm here Jen! Been back and forth with feeling lousy to feeling better. Mom is finally back to feeling better and back to daycare also. It's been really hared being sick and having to take care of her and 2 apartments and 2 sets of bills and meds and..... Got a bit down after what was probably my worst holiday season ever. Had caregivers that didn't show up when I needed them. Family that was too busy to help and all kinds of things that I didn't get done when both Mom and I got sick. Now I am busy trying to catch up on bills, cleaning, organizing and trying to get myself feeling better. I got great news today that Mom is approved for another day at daycare. Now she will be going 4 days a week and I will save $500 plus/month on care givers. Mom's LTC $$ is all gone, so I have to get frugal and either do all the care giving myself, or find ways to cut back here and there. Instead of having someone here all day, I may split the day into 2 shifts so that someone is here to help me get her up and dressed and fed, then have them come back in the evening to help with dinner and getting her to bed. She is getting to be too much for one person to handle alone. I want to thank everyone for the kind words at the passing of my friend. I know she is at peace from a lifetime of blaming family and friends for bad things that happened in her life, and she is also no longer in the severe pain she had lived with for the last 5 years due to a broken spine and other issues. Kuli, good to see you popping up here and there! Miz!!!!!! So good to hear from you! Diane, What can I say? I'm with you all the way! Meanwhile, glad to see your mom is up and about again. Cat, I remember lining up in grade school for MMR, DPT shots and polio drinks. I was always first in line because I did not want to see kids puke or pass out when it was their turn! Grannyto8 Dentures are my nemesis! I gag every morning and at night when I have to remove or put Mom's denture back in. I've even thrown up when they are particularly slimy!! Jen, Bobbie, and everyone else, great words of wisdom to Stormy about her predicament. I have been accused of not loving my mom because of my practical, clinical approach to her care. I try to be very detached from the day to day. I has helped me get through some really tough stuff over the past 5 years at home with Mom. I am doing as she did when she cared for her dad with dementia, over 20 years ago. I am my mother's daughter and the most like her of all of her 7 children. Keeping my emotions in check helps me get through each day. It may feel cold to others, but it's a lifesaver for me and allows me to keep Mom at home for much longer than most care givers can tolerate. I do vent and have temper tantrums and so far have been able to keep guilt at bay. I'm going to tell every one of you to let the guilt go if you can. It will only fester and destroy you in the end. Just the fact that you are a care giver shows you care enough to do the best you can in each of your situations. My first 2 years were tough! I wanted to blame my sibs for my predicament and their lack of help. I wanted to blame Mom for being most comfortable with me and needing me to the point that I wanted to run away. One day I decided to let go of all the guilt and anger towards my sibs and just stopped calling them for help or to vent about Mom. That's when things got a bit easier and I had less thoughts to depress myself with. I'm not saying this is an easy thing to do for everyone, but give it a try and stop feeling guilty for doing the best you can. Stormy, there isn't one of us that has not had the same thoughts on a daily basis! When Mom had that episode a few weeks ago, I found myself very calm and detached and almost a bit angry that she recovered unscathed. That doesn't make me a bad person, just someone who would like her life back! Barb, Have you checked your area to see if there is an adult daycare that would take your mom a day or 2 a week? Check for an eldercare service that would help fund the cost and leave you with a small copay. It has saved my life many times! Well, sorry I have been MIA for the past week, but I'm feeling better and will check in more often. Almost time to go get Mom at daycare. Will check in later! Deef!!!!
Lildeb! I just realized I missed you in my last post!!! Yes, the repeating is definitely enough to drive you crazy!!! I learned years ago to change the subject or in dementia terms, redirect. Do yourself a big favor and don't try to answer the same question or comment over and over. They are easily distracted, therefore, distract them by directing their attention to anything not related to what their brain is stuck on. If you are in the car or outside, "look at the pretty sky!" for instance. If you are inside, how about "would you like a snack?" Anything to get their mind unstuck! If they are asking about loved ones that are long passed, change the subject! It will do more harm to remind them over and over that someone is dead. Memory loss will cause them to grieve every time you remind that that someone is no longer here. Mom occasionally would ask if my dad was home yet and I would just say "not yet. But he'll be home soon." It would be just enough to ease her mind and move on to something else. If they insist, just generic answers like okay, or uh huh will be enough to let them know you are listening and they will move on. My best advice is to stray away from touchy subjects that upset them and redirect and distract whenever possible!!! Good luck!!
ok, any post that ends with 00, then next one coming up is 25,900, gets boat time. That's an invite to the boat.
Some of the caregivers have already been here to the boat, like Miz and Linda and a few others. There's a few that are planning to come out later this Spring since the boat is still in refit (it's a long process) and there have also been caregivers from this thread that have been able to travel to meet each other and stay in each other's homes.
It's a beautiful thing.
So, just to break it up and have a little fun and to remember that there is a life after caregiving, when someone hits a double ought, someone else will usually holler out: Boat Time!
Welcome to the boat.
DEEF!! Glad you are feeling better. I know that you were really sick and I still don't know how you do it all. I love what you have said about letting the guilt and anger go.
Also love that you mentioned so many in your posts. Used to have that energy but haven't in months and months. Just is. Maybe it will come back.
OK, have to go and make something for dinner. Tomorrow we work some more on a boat.
Love you guys way more than you'll ever know, lovbob
My Mother, Bernice passed away yesterday. She went quickly to her Lord. I was there with her. I miss her already with every atom in my body and every nuance of my soul. Mom just turned 80 in December and had a long well loved life. Although her last years were physically difficult for her, in the good times she was the same old happy loving Mother I always adored.
Blessings to everyone here for your support through the last few years. Although I became a bit distant recently, I still feel connected to each and every one of you. My caregiving days are somewhat over, and the future is sitting in front of me patiently waiting to be discovered. In the midst of unbelievable grief, I know my Mom is in Heaven and that gives me the most peace.
Bernadette, I am so sorry for the loss of your mother. So many others here have experienced your grief. Rip, Miz, Kuli, Bobbie and many others. Please still stop in occassionaly and let us know how you are doing. We will still be here for you.
Bernadette - My prayers are with you. It's so hard not to feel sad for our own loss but I am learning to focus on my dad's gain - no more pain, no more suffering, no more frustration at not being able to do the things he used to. I had to stay away from here for awhile after dad passed - just didn't feel like I fit. But I've learned the past year and some that if there's one place I'll always fit, it's here. Angels be with you (they're already with your mom!) ~ Kuli
Bernadette, Angels to you and yours. You are a beautiful daughter. So glad that you posted here to let us know and I hope that you will continue to check in on us so we can learn what you are discovering as your future unfolds. lovbob
hey dEEF, i AGREE WITH BOBBIE DO NOT KNOW HOW YOU DO IT ALL! hmm CONSIDERING SOME OF YOUR help WASN'T HELPING..i MEAN THE PAID HELP WAS BEING PAID BUT NOT HELPING? WHAT ARE YOU THINKING IS NEXT FOR YOUR MOM?
BEH caps lock
I think clinical is the best way to go, she is your mom you love her but the person you knew is gone you need to care for the shell of the person she once was in the place she is now and find a way to deal with the pain and resentment and stress not personalizing HER may be the best way to not personalize you and the stress it involves...? you can love lightly and do what needs to be done. It seems a good solution to not being continually galled by the change and loss literal loss of the mother you once knew. She needs nursing..."be a nurse".
S' bath night her getting ready for the complaining grousing yelling snapping that is grandpa getting his epidermis wet once a week...
Bernadette- I am so sorry for the loss of your mom. You are in my prayers. Hugs to you. Jam- I am still thinking of you and hoping that you are making it through this very difficult time. Prayer and hugs sent your way. Jen- How are you doing? Cat- Haven't heard much from you. Are you doing alright? Hugs to you Judy- You have been MIA too. I hope everything is ok with you. Hugs Cuz- always good to hear your jokes kuli- I hope the new year is treating you good. Bobbie- It sounds like you really enjoy your boat. I'm sure it is good therapy, to just get on the boat and relax or fix it up or whatever you want to do. It sounds like fun. Hugs to you. lil deb- how is your week going? Deef- Thank you for understanding how I feel. It is a relief to know that others have had these thoughts and feelings. I am sure I probably would feel better about myself, my dad and my siblings if I could just learn to lose the guilt, anger, resentment and just learn to deal with it all in a better more healthier way. Instead of getting so stressed out about it. I guess I can always try and see what happens. I am glad that you are feeling a little better now. Take care. If I forgot anyone, I am sorry. Much love and hugs to all of you. Stormy.
Hey Jen! Just trying to keep my sanity here! Yeh! help was getting too comfortable here. I know they truly care about Mom, but have been taking advantage of us for a while now and with the $$ almost gone, it's me or them. As you well know, LTC insurance can not be paid to a family member even if they are the primary care giver. So I hired Merry to spend a lot of time with Mom figuring she wouldn't have a lot of time left on this earth. Five years later, she is nutty as a bed bug, but healthy as a horse! Go figure! I would have used the LTC $$ more sparingly if I had known, but I probably would have lost my mind a long time ago. So now I'll have to get her up and going to daycare 4 times a week, but with the ramp my brother built and a few things I bought for her old wheelchair, we should be good to go! I ordered a new seat, self-releasing seat belt, and padded tray for the chair which I will leave at daycare. I have her new high tech chair for home and the transport chair to get her from the house to the car. The seat belt is not considered a restraint, even though she has no clue how to work it and the tray will make life easier for the daycare workers. It will keep Mom from leaning over the front and sides of the chair and they can give her things to fold or wipe the tray with to keep her busy. I know what a handful she is and am grateful that they don't mind having her there. She'll have Wednesdays off, so she can have a break in the middle of the week. Of course now I will have to get her up and washed, dressed and fed 5 days a week and the same for getting her to bed at night, but that can't be helped. At some point my sibs will have to pitch in at night when I can't do it by myself anymore. I actually got off my arse and did a 30 minute walk aerobic video tonight. Surprised myself by getting through the whole thing without even breaking a good sweat! My Pilates stand is set to be delivered tomorrow, so I'll be starting up my routine with that tomorrow night. Tired of being out of shape and out of breath! Hoping to lose 15 lbs and gain back my strength and stamina at least a little bit! Got to get my tree and village taken down tomorrow so I can start to clean. Started organizing Mom's second bedroom where I sleep. Better get in there and clear off the bed so I have a place to sleep tonight!
Bernadette, sorry about your Mom. Take your time with all that comes after. It won't go anywhere. Deef, glad your feeling better. Sorry you couldn't get much help with your Mom while you were sick. That's tough. Over a foot of snow here today. Boss sent me home early, and I barely made it. Had to park at the neighbors house and walk the last 100 yards. Of course I think there is only 1 snow plow for the entire county. Doesn't look like I will be able to get back into work in the morning. Still snowing. Cuz thanks for the jokes. Bobbie I'm thinking about you on the boat, sounds better than here right now. Everyone hang in there. Love Shirley
Taking a much needed break! This house is 3 stories tall with the attic on the 3rd floor. I just did 10 flights up to get boxes for the X-mas stuff. Then I climbed another 10 flights to bring the now full boxes back to the attic! Now all I have to do is get my husband to take the tree out into the yard, then it's vacuum and out my dining room back in order. Merry's daughter is sitting with Mom today, so I plan to get a lot done, for a change! Haven't told her that their days and hours are getting cut starting next week. Figure I would tell Merry that news. Times are getting tough for all of us, but I have to look out for Mom and me first. Shirley, Aren't you in Texas? Geez, you got more snow than me in central NE. Except for the Halloween storm 2 years ago, we have not seen a foot of snow at one time in the last 2 winters. Supposed to be spring like temps here by the weekend. that will melt whatever snow we have left. Great for the fuel bills!!!! Bobbie, the entire east coast is supposed to be warm this weekend. Is it hot there yet? Okay, I need food! Going to fuel up and get back to work. Hope you are all having a good day!
Quite funny about trying not to hear your mom chew her food. I did the same for years. Mom has a naturally squshy mouth and it makes horrible squishy noises. Oh my gosh..lol. I decided a few years ago I would not want my children to care for me when I'm really old or have Alz. They are impatiant to begin with, so I know they would hate me. I will make my own arrangements to live in Assisted Living or full-time caregiver apart from them. And, I told them they don't even have to visit me when I'm disgusting or not knowing who I am or who they are. Life is too short to ruin their lives too. When they bury me (I already have my burial plot) I want them to remember me as I was before any illness could remove from their memories how I was in better times. It is a burden to any family member to be Caregiver if we are dysfunctional. They have their own families, children and grandchildren to enjoy. If there is a wife/husband couple taking care of their parent often it's not totally a burden. My best friend and her husband are caring for his mother now with Alz. Before that they cared for her mother with Alz who passed away a few year's ago. Though they often can't go somewhere together unless they get a sitter of mom. But he fusses so much to his mother, I think they would be better off putting her in a home, and I think it would better for the mom. I guess we all have to do as our heart allows us to do.
Bernadette, so sorry for your loss n you have my deepest sympathy. It sounds like from reading from your post that your mom was a very loving person. She is in heaven looking over you now. Please feel free to come back n let us know how you are doing. Kuli, I think anyone that has had the opportunity to be a "Caregiver" fit-n-here always. Even though everyone's situation is different n unique, we all share similar issues n support from others. So, please keep coming back.
Deef, thank you so much for those r great ideas n I will try them. I hope no one thinks from my post that I am one, 'unsympathetic person' for the mil. I just feel I have sympathetic all out right now at the moment. It just I am getting so tired physically n mentally. Plus, I will be glad when her antibiotics kicks in for her UTI. Plus, I hope this next time we re-try to get the Barium X-ray on Wed that she actually goes through so the dr will know what is going on with the bottom. I just feel so drained n when I go to lay down, I cannot even sleep all night for some freaking reason n I know that don't help either. Look at me n then I look at your situation n you have had your hands full n some! I so happy for you about the extra day for care n take advantage of it. I can only get my mil to get out once a wk n that is if I keep pushing her that I really need the 4hr break to get other things done. I did stock on sprite, Gatorade, new water filters for UTI. I forgot the dang Cranberry juice without sugar! I was looking around for my glass of ginger ale at dinner time n it was right their n my face! I was thinking about, if the mil goes through the test n she is alright n her UTI is better that, I may go to Fl to next weekend to be with my brother n go to this Kissimmee Mecum Auto show n to check on my dad too. I tried to go last year with my brother n couldn't make it so maybe this time I will get to go. It would be nice to just get a good breathing mini break. I hope everyone is okay n able to get some rest. Jam, I hope you r okay during this time of your loss. Hugs to you.
Guess everyone was busy today or just lurking. I really wore myself out today but my mind feels good knowing that I actually accomplished a few things! have a list of to dos for tomorrow, but that will be after I make a batch of golumpki (stuffed cabbage) polish style. Making a smaller than usual batch just to have something different. My 102 year old fil will be happy when we drop some off at his house! Lildeb, definitely get your butt to Florida! Head on out the door and don't look back! If I could leave right now, I would pack a bag and run!!! Your MIL will survive without you for a few days! Catgrace, welcome to the grossed out thread! I can clean poop all day, but somehow mouth noise and dentures and drool just send me over the edge! I also told my only daughter to definitely put me away and not do this to herself! I I had the chance to do this all over again, I probably would, but I also wouldn't recommend being a care giver to anyone else! It takes a very high toll on your body and mind and the years you lose, you can never get back. Sat on the front porch in the sun after lunch, to take a breather from all the work I was doing. My neighbor stopped to talk and tell me he and his were leaving for Miss. to visit his brother who was battling cancer. Sister had called to say he took a turn for the worse and that they should get there fast to see him. as we were talking, his dad came out and told him he just got off the phone and his brother had passed away. So sad. Another young one gone. he was in his early fifties. Our families both grew up in this neighborhood and he had moved back about 5 years ago to keep an eye on his dad. We talk a lot about the "old days" and all the people that have come and gone in the old neighborhood. Both of our grandparents were best friends for years and years. Okay, I'm wiped out and still need to feed the cats and get to bed! Mom has daycare in the morning. Hope you all had a somewhat easy day!
I think I am getting sick with a cold. My nose has felt funny for the last two days and tonight I started feeling kinda achy. And the throat is getting a little sore. I sure as hell hope its not the flu. Cause I have not had the flu shot. I got Connor a nasal flu mist last week. And tonight he started sneezing alot and nose runny some. I sure hope he is not getting sick too. I have been taking clariden d to keep the mucus from running down my throat and making my throat feel raw. I hate getting sick. Ugh.... Love and hugs stormy.
Hello all! Haven't posted in a while... Christmas was good. New Years-everyone was sick... Just the usual roller coaster ride here. Tired... The let down of the Holidays rolls into the long lonley winter months until spring happily rolls around. Trying to catch up on all your posts! So sorry for all who were or are sick! And so sorry for those of you who have lost loved ones. You are all in my prayers. Mame
Good morning all...FINALLY seeing the end of almost 4 weeks of being sick. 2 different illnesses, dragging along working, visiting and tending to mom's issues, taking my daughter and the baby places as she doesn't have transportation, being sick, stressing out. I actually got 7 HOURS OF SLEEP IN A ROW!!! last night. That is unheard of for me. I didn't know how to act when I got up but I feel sooo much better! Mom has jumped from level one care to level 3...she also had her first "wandering" episode, so the concern is mounting. Perhaps memory care is the way to go as she is also unable to participate much in regular ALF activities as her in the moment cognition is zero. I know they have activities geared towards that level as opposed to trying to drag mom to bingo etc. when she can't really hear or understand the process. Finally got the Medicaid process started, now I just have to get her a new denture partial before she is completely out of money. It's so sad to see her with nothing to do and progressing to delusions, fear and hallucinations but I do think that memory care will be the best route. Anybody have/had experience with the memory care units and what they do? I'm taking a tour of a different place tomorrow to see for myself. So looks like I'll be packing up her stuff to pare down her extraneous items and eliminate places she can rathole her hearing aids, toothbrush, etc. Have a good weekend everybody. Bobbie: where is your boat located? I LOVE boats. We had a small I/O ski boat for years and the best vacations I've had have been on cruises and houseboats. I may have to come and check it out for myself!!
Stormy! are you sure it's not the flu? I just saw the first guy here with symptoms and when I said you are supposed to stay home and he is the same way so many are: I have to work. And I get it.
But I still got back on the boat and scrubbed myself and everything I touched.....
Mame! Good to see you and I think that some of us have been dealing with some strain of the flu and we don't realize it. Was sick as a dog a few days after Christmas so man oh man.
Hey CatGrace welcome to the thread. I hear you on not wanting to do this to someone else. Same here, but then again I don't have any kids.
Bernadette, I hope you are coping with your loss. Angels to you.
Cuz! Thanks for the jokes.
Lucy!! You are on the right path for memory care. Ask to see every nook and cranny in the facilities and meet the people who work there. Caregiver ratio should be in the 3 to 1 area. The more people available to work with the seniors the less time they spend sitting wet or dirty. Ask about 'toileting' right up front so they don't try and make a big deal out of it later.
Good luck plugging up the places where she can stash stuff. And yes, it's heartbreakingly sad. Give yourself the opportunity to grieve. We, as caregivers grieve before, during and after. It's a long process and a lot easier with folks who get it.
Sleep is all important. I took xanax and was still able to hear mom and do for her but it let me lay my head down to fall asleep again without the racing thoughts that do nothing but stress you out more. More sleep equals more sanity in an insane situation.
Anybody else have any tips for Lucy? These caregivers are amazing.
The boat is located in a private location and when someone comes we get that info to them no problem. It's also not in the same place all the time. The reason for discretion is that this thread and site can be accessed by the entire world (not that anyone gives a hoot but it only takes one) and that could be wierd for all. I know you get it and thanks. Will see you soon I hope.
Deef! Hope you're healing ok with that workload. Sorry about your neighbor's brother. I was the same with the mouth doing this and that. ugh.
ok, guys are banging around on the dock and I am finally getting the old washer and dryer off the boat.
Thanks Deef, yet, I want to make sure she will be fine after n hopefully she get this Barium X-ray so we will know what is going on with her. She's getting it hopefully on Wed so we will see. Yes, i know I need this break big time! Brings your bags n we can all go down their for I just got through texting one of my brothers that I will be staying with n he said, 'it sunny n 80 degrees." Strange weather for we have 70 here in col, GA. Stormy, I hope u don't get that nasty flu bug. I have a couple of sneezes n headache n nose pressure but I think mine is just allergies. Hopefully, that is all u have. Mame, glad to hear your Christmas was good but sorry about the New Year sickness. I heard on t.v. this new strain for flu is pretty nasty too. Lucy, that sleep really helps when u can get it. As for the Asst. living n places, the best thing to do is go check for yourself. Look around n see if people r just laying around n if it's close to meal time their should be some sort of aroma of something cooking. I went to one n people were sating around n when we asked the lady said they r waiting on dinner. However, their was no aroma of anything being cooked. We even had a couple that pulled us to the side n told us to, 'not bring her here.' also, their activity area was very very small. We didn't come back n I did let the Alz association know what we heard from a couple living their at the place. Not trying to worry you for their r some good places so do what you r doing n check the places out n observe. Good luck. Bob, I hear about the laying down n having racing thoughts for I normally can fall sleep but here lately it has been that way with mil. I also, worry about what other folks think about me n I know I shouldn't but have always been that way. It can drive me nuts sometimes. right now I hope the Neice of the mil don't think I am not being sincere enough for the mil but I am so tired n sincere all out!!! I came close to telling her to take her to her house for a day or two. She couldn't handle her just taking her out for lunch. However, I did get a couple hr nap so, I feel a little better n revived. I was able to practice not letting things bother me by the constant complaints from the mil today. That"s a plus for starter n I got the mil to take her weekly bath for she was way overdue. Catgrace, I have to make sure any meat I serve to the mil is not too chewy for u can hear her false teeth making clacking sounds sometimes. I try to get her to let me use some stuff to help hold them in but she will go off on me n tell me that, "I don't have any problem with my teeth!' So, I just don;t let it bother me anymore trying to help her with that situation. It does seem that some of us as time starts to get a little bit more challenging than we can handle that, we will have to do what we think is best for all of us in the household. Of course, I am only touching the surface n I know I still have a lot to learn as I go. We too have r own burial area paid for but don't know how u have the asst,. living already set up to keep from being a burden from your family. It does sound like an idea I would want to do as well. I hope everyone is able to have a nice weekend for I am going to try.
Deef, sorry to hear about your neighbor's brother. Goodness you got quite the workout packing up your Christmas decorations. Deb, your taking care of your MIL, and no one else is stepping up to help; you. Hope you get away to Florida. You sure deserve a break. Bobbie, good luck with the old washer and dryer. Lucy, when your looking at places, go with your gut. It would be a good idea to see a meal at the facility. Make sure they help residents that need help at meal time, and that the food is fit to eat. Stormy hope your feeling better. The flu going around is a bad one. I know. I'm still coughing. The snow has melted, it was 60 degrees today. Was the most snow I've ever seen here. Had to dig the car out 3 times on the way to work yesterday. The high way wasn't bad, but the little dirt road I live on didn't get plowed. Typical weather though. 5 miles away on the other side of the mountain, they only got 3 to 4 inches of snow. Yes, Deef, I do live in Texas, 180 miles east of El Paso., and over a mile high in elevation. There is a huge national park 90 miles south, right on the Rio Grande. One of our patients from the dentist office disappeared 12 days ago in the park. He went hiking alone, and hasn't been seen since. They've had search parties, and helicopters looking for him, but no sign. Nice guy, I'm afraid the chances of finding him alive are pretty slim at this point. Better get outside to feed the animals. Love you guys
Lucy: Since you are starting on the Medicaid application, let me suggest that you review any potential care facility via the Medicare.gov website. Each year, all facilities that accept Medicare/Medicaid are physically reviewed on site. Medicare rates them on a one to five star basis.
Go to Medicare.gov and look at the top banner (in blue). Click on "Find doctors, Hospitals & Facililties" You will be taken to a page and then click on, "I want to find Nursing Homes." Follow the directions from there. You can enter the name of a facility or put in your zip code and get listings within so many miles (you choose) of your zip.
In general, what I found was that the highest rated facilities were often NON-PROFIT facilities with a religious foundation. In my area, about an hour from me was a 5 star rated Nursing Home. It was Lutheran supported and was in a larger city and received tons of community support. The employees there were long term. My dad spent the last 2 months of his life in a 3 star facility, which was 5 minutes from our home. I wanted him to be close so I could see him every day or 2 times a day if need be. I don't think there is any perfect place. It just depends on what you give up and get in return. Distance vs quality is always a trade off. We didn't want my dad to have to give up his doctor either. They had a great relationship, so we kept him local.
The medicare site is helpful and it will give you information about ratios....let me just say there are never enough aids...and it will tell you about complaints against the facilities and any thing their inspections turned up.
Hope this helps. It's not the answer, but it's additional information.
Lucy, what kind of meds is your mom on? Does she take anything for memory such as aricept or namanda? Doctor's like to tell people that the patient has progressed too far for them to help, but Mom is on her last brain cell and is still taking both Aricept and Namenda. If you take them away, she has absolutely no comprehension what so ever. They also have a calming affect. My mom is also on PD meds, Paxil for depression and Zanax for anxiety. She gets Seroquel at night to help her sleep. I know, it sounds like a lot and there are warnings about some of these meds in the elderly with dementia, but the good they do for Mom far outweighs the chances of the side affects. Hallucinations will cause all kinds of anxiety and depression follows as they make less and less sense of what is going on in their messed up minds. Check with a geriatric doctor or neurologist and see if they can prescribe something for her memory, depression and anxiety. Start with memory first and see how that goes. Then depression would be next. It will take a few months and trial and error to see what the best combo is for your mom, but believe me, the right meds can make a world of difference in her attitude. I quit my job 5 years ago to care for Mom and I know how hard it is to find that happy medium for all concerned. After watching her in rehab, twice, after falls, I decided home was best for her. It's hard on me and very frustrating all the time, but she is clean, fed, and not drugged to the hilt as she would be in a facility. I'm lucky in the fact that the PD has progressed to the point that she is in a wheelchair, so that makes it much easier to care for her now. I also just got the green light for another day at adult day health. Now she will be there from 9 to 3 on Mon., Tues., Wed., and Fri.This will save over $700/ month in care giver costs. I will have to get her out the door and to daycare 4 times a week and will only have help with her on Wed. afternoons and the weekend. Lucy, definitely see if meds can get her some relief. It will make things easier for you too! Stormy, Sorry you feel sick! I had that last week for 4 days and then it went away. The sore throat was the worst part.Mame, good to hear from you again! I had the stomach bug X-mas night, after stuffing my face all day. What a night that was!!! Meanwhile!!!! Amazing to go from a foot of snow to 60 degrees! Did the goats like romping in the white stuff? Lildeb, &0? Nice!! Raining here right now with the threat of freezing rain during the night and early morning hours. Got my stuffed cabbage done and was going to clean out Mom's closet and get some things organized, but I was on the phone with Rip for a while and I still have 1 more bed to make up for the night. So I guess I will turn on the TV and knit before bed. I can do the closets tomorrow! Diane, How is your Mom? Is it a UTI causing all the fuss again? Hope you are coping! Jen, cold out there in Spokane? Supposed to be 50 here on Sunday. Can't wait! Okay, food to put away and a bed to make up, then relax a bit before bed. Night everyone!
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Where s deefer?
JAM condolences for your loss, hope all is peace and loving family beside you there.
Got a bit down after what was probably my worst holiday season ever. Had caregivers that didn't show up when I needed them. Family that was too busy to help and all kinds of things that I didn't get done when both Mom and I got sick. Now I am busy trying to catch up on bills, cleaning, organizing and trying to get myself feeling better.
I got great news today that Mom is approved for another day at daycare. Now she will be going 4 days a week and I will save $500 plus/month on care givers. Mom's LTC $$ is all gone, so I have to get frugal and either do all the care giving myself, or find ways to cut back here and there. Instead of having someone here all day, I may split the day into 2 shifts so that someone is here to help me get her up and dressed and fed, then have them come back in the evening to help with dinner and getting her to bed. She is getting to be too much for one person to handle alone.
I want to thank everyone for the kind words at the passing of my friend. I know she is at peace from a lifetime of blaming family and friends for bad things that happened in her life, and she is also no longer in the severe pain she had lived with for the last 5 years due to a broken spine and other issues.
Kuli, good to see you popping up here and there!
Miz!!!!!! So good to hear from you!
Diane, What can I say? I'm with you all the way!
Meanwhile, glad to see your mom is up and about again.
Cat, I remember lining up in grade school for MMR, DPT shots and polio drinks. I was always first in line because I did not want to see kids puke or pass out when it was their turn!
Grannyto8 Dentures are my nemesis! I gag every morning and at night when I have to remove or put Mom's denture back in. I've even thrown up when they are particularly slimy!!
Jen, Bobbie, and everyone else, great words of wisdom to Stormy about her predicament.
I have been accused of not loving my mom because of my practical, clinical approach to her care. I try to be very detached from the day to day. I has helped me get through some really tough stuff over the past 5 years at home with Mom. I am doing as she did when she cared for her dad with dementia, over 20 years ago. I am my mother's daughter and the most like her of all of her 7 children. Keeping my emotions in check helps me get through each day. It may feel cold to others, but it's a lifesaver for me and allows me to keep Mom at home for much longer than most care givers can tolerate. I do vent and have temper tantrums and so far have been able to keep guilt at bay.
I'm going to tell every one of you to let the guilt go if you can. It will only fester and destroy you in the end. Just the fact that you are a care giver shows you care enough to do the best you can in each of your situations. My first 2 years were tough! I wanted to blame my sibs for my predicament and their lack of help. I wanted to blame Mom for being most comfortable with me and needing me to the point that I wanted to run away.
One day I decided to let go of all the guilt and anger towards my sibs and just stopped calling them for help or to vent about Mom. That's when things got a bit easier and I had less thoughts to depress myself with. I'm not saying this is an easy thing to do for everyone, but give it a try and stop feeling guilty for doing the best you can.
Stormy, there isn't one of us that has not had the same thoughts on a daily basis! When Mom had that episode a few weeks ago, I found myself very calm and detached and almost a bit angry that she recovered unscathed. That doesn't make me a bad person, just someone who would like her life back!
Barb, Have you checked your area to see if there is an adult daycare that would take your mom a day or 2 a week? Check for an eldercare service that would help fund the cost and leave you with a small copay. It has saved my life many times!
Well, sorry I have been MIA for the past week, but I'm feeling better and will check in more often. Almost time to go get Mom at daycare. Will check in later! Deef!!!!
Yes, the repeating is definitely enough to drive you crazy!!! I learned years ago to change the subject or in dementia terms, redirect. Do yourself a big favor and don't try to answer the same question or comment over and over. They are easily distracted, therefore, distract them by directing their attention to anything not related to what their brain is stuck on. If you are in the car or outside, "look at the pretty sky!" for instance. If you are inside, how about "would you like a snack?" Anything to get their mind unstuck! If they are asking about loved ones that are long passed, change the subject! It will do more harm to remind them over and over that someone is dead. Memory loss will cause them to grieve every time you remind that that someone is no longer here. Mom occasionally would ask if my dad was home yet and I would just say "not yet. But he'll be home soon." It would be just enough to ease her mind and move on to something else. If they insist, just generic answers like okay, or uh huh will be enough to let them know you are listening and they will move on.
My best advice is to stray away from touchy subjects that upset them and redirect and distract whenever possible!!! Good luck!!
ok, any post that ends with 00, then next one coming up is 25,900, gets boat time. That's an invite to the boat.
Some of the caregivers have already been here to the boat, like Miz and Linda and a few others.
There's a few that are planning to come out later this Spring since the boat is still in refit (it's a long process) and there have also been caregivers from this thread that have been able to travel to meet each other and stay in each other's homes.
It's a beautiful thing.
So, just to break it up and have a little fun and to remember that there is a life after caregiving, when someone hits a double ought, someone else will usually holler out:
Boat Time!
Welcome to the boat.
DEEF!! Glad you are feeling better. I know that you were really sick and I still don't know how you do it all.
I love what you have said about letting the guilt and anger go.
Also love that you mentioned so many in your posts. Used to have that energy but haven't in months and months. Just is. Maybe it will come back.
OK, have to go and make something for dinner. Tomorrow we work some more on a boat.
Love you guys way more than you'll ever know,
lovbob
Blessings to everyone here for your support through the last few years. Although I became a bit distant recently, I still feel connected to each and every one of you. My caregiving days are somewhat over, and the future is sitting in front of me patiently waiting to be discovered. In the midst of unbelievable grief, I know my Mom is in Heaven and that gives me the most peace.
-Bernadette
Angels to you and yours. You are a beautiful daughter.
So glad that you posted here to let us know and I hope that you will continue to check in on us so we can learn what you are discovering as your future unfolds.
lovbob
BEH caps lock
I think clinical is the best way to go, she is your mom you love her but the person you knew is gone you need to care for the shell of the person she once was in the place she is now and find a way to deal with the pain and resentment and stress not personalizing HER may be the best way to not personalize you and the stress it involves...? you can love lightly and do what needs to be done. It seems a good solution to not being continually galled by the change and loss literal loss of the mother you once knew. She needs nursing..."be a nurse".
S' bath night her getting ready for the complaining grousing yelling snapping that is grandpa getting his epidermis wet once a week...
Soak that stuff....
Jam- I am still thinking of you and hoping that you are making it through this very difficult time. Prayer and hugs sent your way.
Jen- How are you doing?
Cat- Haven't heard much from you. Are you doing alright? Hugs to you
Judy- You have been MIA too. I hope everything is ok with you. Hugs
Cuz- always good to hear your jokes
kuli- I hope the new year is treating you good.
Bobbie- It sounds like you really enjoy your boat. I'm sure it is good therapy, to just get on the boat and relax or fix it up or whatever you want to do. It sounds like fun. Hugs to you.
lil deb- how is your week going?
Deef- Thank you for understanding how I feel. It is a relief to know that others have had these thoughts and feelings. I am sure I probably would feel better about myself, my dad and my siblings if I could just learn to lose the guilt, anger, resentment and just learn to deal with it all in a better more healthier way. Instead of getting so stressed out about it. I guess I can always try and see what happens.
I am glad that you are feeling a little better now. Take care. If I forgot anyone, I am sorry. Much love and hugs to all of you. Stormy.
Yeh! help was getting too comfortable here. I know they truly care about Mom, but have been taking advantage of us for a while now and with the $$ almost gone, it's me or them. As you well know, LTC insurance can not be paid to a family member even if they are the primary care giver. So I hired Merry to spend a lot of time with Mom figuring she wouldn't have a lot of time left on this earth. Five years later, she is nutty as a bed bug, but healthy as a horse! Go figure! I would have used the LTC $$ more sparingly if I had known, but I probably would have lost my mind a long time ago.
So now I'll have to get her up and going to daycare 4 times a week, but with the ramp my brother built and a few things I bought for her old wheelchair, we should be good to go! I ordered a new seat, self-releasing seat belt, and padded tray for the chair which I will leave at daycare. I have her new high tech chair for home and the transport chair to get her from the house to the car. The seat belt is not considered a restraint, even though she has no clue how to work it and the tray will make life easier for the daycare workers. It will keep Mom from leaning over the front and sides of the chair and they can give her things to fold or wipe the tray with to keep her busy. I know what a handful she is and am grateful that they don't mind having her there. She'll have Wednesdays off, so she can have a break in the middle of the week. Of course now I will have to get her up and washed, dressed and fed 5 days a week and the same for getting her to bed at night, but that can't be helped. At some point my sibs will have to pitch in at night when I can't do it by myself anymore.
I actually got off my arse and did a 30 minute walk aerobic video tonight. Surprised myself by getting through the whole thing without even breaking a good sweat! My Pilates stand is set to be delivered tomorrow, so I'll be starting up my routine with that tomorrow night. Tired of being out of shape and out of breath! Hoping to lose 15 lbs and gain back my strength and stamina at least a little bit! Got to get my tree and village taken down tomorrow so I can start to clean.
Started organizing Mom's second bedroom where I sleep. Better get in there and clear off the bed so I have a place to sleep tonight!
Deef, glad your feeling better. Sorry you couldn't get much help with your Mom while you were sick. That's tough.
Over a foot of snow here today. Boss sent me home early, and I barely made it. Had to park at the neighbors house and walk the last 100 yards. Of course I think there is only 1 snow plow for the entire county. Doesn't look like I will be able to get back into work in the morning. Still snowing.
Cuz thanks for the jokes. Bobbie I'm thinking about you on the boat, sounds better than here right now. Everyone hang in there. Love Shirley
Now all I have to do is get my husband to take the tree out into the yard, then it's vacuum and out my dining room back in order.
Merry's daughter is sitting with Mom today, so I plan to get a lot done, for a change! Haven't told her that their days and hours are getting cut starting next week. Figure I would tell Merry that news. Times are getting tough for all of us, but I have to look out for Mom and me first.
Shirley, Aren't you in Texas? Geez, you got more snow than me in central NE. Except for the Halloween storm 2 years ago, we have not seen a foot of snow at one time in the last 2 winters. Supposed to be spring like temps here by the weekend. that will melt whatever snow we have left. Great for the fuel bills!!!!
Bobbie, the entire east coast is supposed to be warm this weekend. Is it hot there yet?
Okay, I need food! Going to fuel up and get back to work. Hope you are all having a good day!
I decided a few years ago I would not want my children to care for me when I'm really old or have Alz. They are impatiant to begin with, so I know they would hate me. I will make my own arrangements to live in Assisted Living or full-time caregiver apart from them. And, I told them they don't even have to visit me when I'm disgusting or not knowing who I am or who they are. Life is too short to ruin their lives too. When they bury me (I already have my burial plot) I want them to remember me as I was before any illness could remove from their memories how I was in better times. It is a burden to any family member to be Caregiver if we are dysfunctional. They have their own families, children and grandchildren to enjoy. If there is a wife/husband couple taking care of their parent often it's not totally a burden. My best friend and her husband are caring for his mother now with Alz. Before that they cared for her mother with Alz who passed away a few year's ago. Though they often can't go somewhere together unless they get a sitter of mom. But he fusses so much to his mother, I think they would be better off putting her in a home, and I think it would better for the mom. I guess we all have to do as our heart allows us to do.
Kuli, I think anyone that has had the opportunity to be a "Caregiver" fit-n-here always. Even though everyone's situation is different n unique, we all share similar issues n support from others. So, please keep coming back.
Deef, thank you so much for those r great ideas n I will try them. I hope no one thinks from my post that I am one, 'unsympathetic person' for the mil. I just feel I have sympathetic all out right now at the moment. It just I am getting so tired physically n mentally. Plus, I will be glad when her antibiotics kicks in for her UTI. Plus, I hope this next time we re-try to get the Barium X-ray on Wed that she actually goes through so the dr will know what is going on with the bottom. I just feel so drained n when I go to lay down, I cannot even sleep all night for some freaking reason n I know that don't help either. Look at me n then I look at your situation n you have had your hands full n some! I so happy for you about the extra day for care n take advantage of it. I can only get my mil to get out once a wk n that is if I keep pushing her that I really need the 4hr break to get other things done. I did stock on sprite, Gatorade, new water filters for UTI. I forgot the dang Cranberry juice without sugar! I was looking around for my glass of ginger ale at dinner time n it was right their n my face!
I was thinking about, if the mil goes through the test n she is alright n her UTI is better that, I may go to Fl to next weekend to be with my brother n go to this Kissimmee Mecum Auto show n to check on my dad too. I tried to go last year with my brother n couldn't make it so maybe this time I will get to go. It would be nice to just get a good breathing mini break.
I hope everyone is okay n able to get some rest.
Jam, I hope you r okay during this time of your loss. Hugs to you.
Lildeb, definitely get your butt to Florida! Head on out the door and don't look back! If I could leave right now, I would pack a bag and run!!! Your MIL will survive without you for a few days!
Catgrace, welcome to the grossed out thread! I can clean poop all day, but somehow mouth noise and dentures and drool just send me over the edge! I also told my only daughter to definitely put me away and not do this to herself! I I had the chance to do this all over again, I probably would, but I also wouldn't recommend being a care giver to anyone else! It takes a very high toll on your body and mind and the years you lose, you can never get back.
Sat on the front porch in the sun after lunch, to take a breather from all the work I was doing. My neighbor stopped to talk and tell me he and his were leaving for Miss. to visit his brother who was battling cancer. Sister had called to say he took a turn for the worse and that they should get there fast to see him. as we were talking, his dad came out and told him he just got off the phone and his brother had passed away. So sad. Another young one gone. he was in his early fifties. Our families both grew up in this neighborhood and he had moved back about 5 years ago to keep an eye on his dad. We talk a lot about the "old days" and all the people that have come and gone in the old neighborhood. Both of our grandparents were best friends for years and years.
Okay, I'm wiped out and still need to feed the cats and get to bed! Mom has daycare in the morning.
Hope you all had a somewhat easy day!
Bobbie: where is your boat located? I LOVE boats. We had a small I/O ski boat for years and the best vacations I've had have been on cruises and houseboats. I may have to come and check it out for myself!!
Stormy! are you sure it's not the flu? I just saw the first guy here with symptoms and when I said you are supposed to stay home and he is the same way so many are: I have to work.
And I get it.
But I still got back on the boat and scrubbed myself and everything I touched.....
Mame! Good to see you and I think that some of us have been dealing with some strain of the flu and we don't realize it. Was sick as a dog a few days after Christmas so man oh man.
Hey CatGrace welcome to the thread. I hear you on not wanting to do this to someone else. Same here, but then again I don't have any kids.
Bernadette, I hope you are coping with your loss. Angels to you.
Cuz! Thanks for the jokes.
Lucy!! You are on the right path for memory care. Ask to see every nook and cranny in the facilities and meet the people who work there. Caregiver ratio should be in the 3 to 1 area.
The more people available to work with the seniors the less time they spend sitting wet or dirty.
Ask about 'toileting' right up front so they don't try and make a big deal out of it later.
Good luck plugging up the places where she can stash stuff.
And yes, it's heartbreakingly sad. Give yourself the opportunity to grieve. We, as caregivers grieve before, during and after. It's a long process and a lot easier with folks who get it.
Sleep is all important. I took xanax and was still able to hear mom and do for her but it let me lay my head down to fall asleep again without the racing thoughts that do nothing but stress you out more. More sleep equals more sanity in an insane situation.
Anybody else have any tips for Lucy?
These caregivers are amazing.
The boat is located in a private location and when someone comes we get that info to them no problem. It's also not in the same place all the time.
The reason for discretion is that this thread and site can be accessed by the entire world (not that anyone gives a hoot but it only takes one) and that could be wierd for all. I know you get it and thanks. Will see you soon I hope.
Deef! Hope you're healing ok with that workload. Sorry about your neighbor's brother. I was the same with the mouth doing this and that. ugh.
ok, guys are banging around on the dock and I am finally getting the old washer and dryer off the boat.
lildeb and everybody stay strong.
lovbob
Stormy, I hope u don't get that nasty flu bug.
I have a couple of sneezes n headache n nose pressure but I think mine is just allergies. Hopefully, that is all u have.
Mame, glad to hear your Christmas was good but sorry about the New Year sickness. I heard on t.v. this new strain for flu is pretty nasty too.
Lucy, that sleep really helps when u can get it. As for the Asst. living n places, the best thing to do is go check for yourself. Look around n see if people r just laying around n if it's close to meal time their should be some sort of aroma of something cooking. I went to one n people were sating around n when we asked the lady said they r waiting on dinner. However, their was no aroma of anything being cooked. We even had a couple that pulled us to the side n told us to, 'not bring her here.' also, their activity area was very very small. We didn't come back n I did let the Alz association know what we heard from a couple living their at the place. Not trying to worry you for their r some good places so do what you r doing n check the places out n observe. Good luck.
Bob, I hear about the laying down n having racing thoughts for I normally can fall sleep but here lately it has been that way with mil. I also, worry about what other folks think about me n I know I shouldn't but have always been that way. It can drive me nuts sometimes. right now I hope the Neice of the mil don't think I am not being sincere enough for the mil but I am so tired n sincere all out!!! I came close to telling her to take her to her house for a day or two. She couldn't handle her just taking her out for lunch. However, I did get a couple hr nap so, I feel a little better n revived. I was able to practice not letting things bother me by the constant complaints from the mil today. That"s a plus for starter n I got the mil to take her weekly bath for she was way overdue.
Catgrace, I have to make sure any meat I serve to the mil is not too chewy for u can hear her false teeth making clacking sounds sometimes. I try to get her to let me use some stuff to help hold them in but she will go off on me n tell me that, "I don't have any problem with my teeth!' So, I just don;t let it bother me anymore trying to help her with that situation. It does seem that some of us as time starts to get a little bit more challenging than we can handle that, we will have to do what we think is best for all of us in the household. Of course, I am only touching the surface n I know I still have a lot to learn as I go. We too have r own burial area paid for but don't know how u have the asst,. living already set up to keep from being a burden from your family. It does sound like an idea I would want to do as well.
I hope everyone is able to have a nice weekend for I am going to try.
Deb, your taking care of your MIL, and no one else is stepping up to help; you. Hope you get away to Florida. You sure deserve a break.
Bobbie, good luck with the old washer and dryer.
Lucy, when your looking at places, go with your gut. It would be a good idea to see a meal at the facility. Make sure they help residents that need help at meal time, and that the food is fit to eat.
Stormy hope your feeling better. The flu going around is a bad one. I know.
I'm still coughing.
The snow has melted, it was 60 degrees today. Was the most snow I've ever seen here. Had to dig the car out 3 times on the way to work yesterday. The high way wasn't bad, but the little dirt road I live on didn't get plowed. Typical weather though. 5 miles away on the other side of the mountain, they only got 3 to 4 inches of snow. Yes, Deef, I do live in Texas, 180 miles east of El Paso., and over a mile high in elevation. There is a huge national park 90 miles south, right on the Rio Grande. One of our patients from the dentist office disappeared 12 days ago in the park. He went hiking alone, and hasn't been seen since. They've had search parties, and helicopters looking for him, but no sign. Nice guy, I'm afraid the chances of finding him alive are pretty slim at this point.
Better get outside to feed the animals. Love you guys
Go to Medicare.gov and look at the top banner (in blue). Click on "Find doctors, Hospitals & Facililties" You will be taken to a page and then click on, "I want to find Nursing Homes." Follow the directions from there. You can enter the name of a facility or put in your zip code and get listings within so many miles (you choose) of your zip.
In general, what I found was that the highest rated facilities were often NON-PROFIT facilities with a religious foundation. In my area, about an hour from me was a 5 star rated Nursing Home. It was Lutheran supported and was in a larger city and received tons of community support. The employees there were long term. My dad spent the last 2 months of his life in a 3 star facility, which was 5 minutes from our home. I wanted him to be close so I could see him every day or 2 times a day if need be. I don't think there is any perfect place. It just depends on what you give up and get in return. Distance vs quality is always a trade off. We didn't want my dad to have to give up his doctor either. They had a great relationship, so we kept him local.
The medicare site is helpful and it will give you information about ratios....let me just say there are never enough aids...and it will tell you about complaints against the facilities and any thing their inspections turned up.
Hope this helps. It's not the answer, but it's additional information.
Hallucinations will cause all kinds of anxiety and depression follows as they make less and less sense of what is going on in their messed up minds. Check with a geriatric doctor or neurologist and see if they can prescribe something for her memory, depression and anxiety. Start with memory first and see how that goes. Then depression would be next. It will take a few months and trial and error to see what the best combo is for your mom, but believe me, the right meds can make a world of difference in her attitude.
I quit my job 5 years ago to care for Mom and I know how hard it is to find that happy medium for all concerned. After watching her in rehab, twice, after falls, I decided home was best for her. It's hard on me and very frustrating all the time, but she is clean, fed, and not drugged to the hilt as she would be in a facility. I'm lucky in the fact that the PD has progressed to the point that she is in a wheelchair, so that makes it much easier to care for her now. I also just got the green light for another day at adult day health. Now she will be there from 9 to 3 on Mon., Tues., Wed., and Fri.This will save over $700/ month in care giver costs. I will have to get her out the door and to daycare 4 times a week and will only have help with her on Wed. afternoons and the weekend.
Lucy, definitely see if meds can get her some relief. It will make things easier for you too!
Stormy, Sorry you feel sick! I had that last week for 4 days and then it went away. The sore throat was the worst part.Mame, good to hear from you again! I had the stomach bug X-mas night, after stuffing my face all day. What a night that was!!!
Meanwhile!!!! Amazing to go from a foot of snow to 60 degrees! Did the goats like romping in the white stuff?
Lildeb, &0? Nice!! Raining here right now with the threat of freezing rain during the night and early morning hours.
Got my stuffed cabbage done and was going to clean out Mom's closet and get some things organized, but I was on the phone with Rip for a while and I still have 1 more bed to make up for the night. So I guess I will turn on the TV and knit before bed. I can do the closets tomorrow!
Diane, How is your Mom? Is it a UTI causing all the fuss again? Hope you are coping!
Jen, cold out there in Spokane? Supposed to be 50 here on Sunday. Can't wait!
Okay, food to put away and a bed to make up, then relax a bit before bed.
Night everyone!