I have just discovered this site, and have read some of the posts from others who are dealing with parents with Alzheimer's, and so good to know I'm not alone! My mom (86) has Alzheimer's, and although she still knows most of her immediate family, she has trouble remembering relationships (sometimes she'll ask me, "Are you my daughter?"), and her short term memory and most of her long time memory is GONE. However, she still lives at home with my dad (89), who is amazingly spry and sharp, although dealing with mom is pulling him down. I live next door to them, so although I have a sister who lives in a nearby town, I am the one who deals with most of their problems...I do the cooking and caring for them, straightening out doctor bills and insurance problems, etc. My sister visits when she can, but that is only for a couple of hours every other week, and she hasn't a clue as to what dad & I go through daily, so she can be a little critical when we lose patience. Which isn't often...my dad was never a patient man, but he is amazing with my mom, and I admire him so much. However, if dad is a little sharp in answering a question that's been asked 27 times before, my sister doesn't understand that he deals with this 24/7, and that's much more wearing than she can imagine. I have never allowed my mom to see my frustration until this past weekend, but I was SO stressed and exasperated, and I let it show. I have since felt SO guilty, cuz I know she can't help how she is.

My only granddaughter turned 1 year old on Saturday, and we all went to her birthday party (about 2 hours away). The road trip was hell, as mom constantly asked where are we going, what are we doing, why am I in this car, where are we...it never stopped. We tried listening to a CD of hymns I thought they would enjoy, but then it was "Who is that singing, are you singing, can you hear that music, etc" Then once we were there, she didn't recognize anyone and spent most of her time asking me who these people are, why am I here, what's going on, when are we going home, who is going to take me home, etc. We had to cut the visit short because I finally couldn't stand any more, and I told her, "Fine...you want to go home, we are going home!" So what should have been a joyful, happy day was totally spoiled. The old saying "If mama aint' happy, ain't nobody happy" certainly applies. ;) That's the first time I've aired my frustration in her presence (usually I wait til I'm alone to pull my hair out), and although it didn't faze her and she doesn't remember (she doesn't even remember the party), I'm feeling like a cad. I love my mom, but lately I've had these horrible thoughts: "This is not my mom...I want my mom back!" There. I've said it out loud. More guilt to wrap myself in!

When I step back, I know I'm doing the best I can, but I'm just not up to this! I know it's never going to get better. I know it's only going to get worse. I recognize that it IS getting worse every day. If I'm losing it now, how am I going to deal with it as her mind deteriorates further? I have spent 2 days weeping. My eyes are red and irritated, my cheeks are chapped, and I can't sleep. My husband is so supportive, and I am so fortunate that he is the man he is. He has patience galore, he buoys me up constantly, but I can't seem to pull out of the funk this has left me in.

OK folks. Ordinarily, I'm a "glass half full" kind of gal...although you probably don't believe it after reading this. I just needed to vent, no one in my circle can understand how I feel, and I know from reading your posts that you are dealing with some of the same things I am...and I know some of you have much bigger problems. But as my grandmother used to say. "A little hurt is just as bad as a big hurt when it's your hurt". Ain't it the truth! I know I am hurting. Thanks for this forum...just getting some of this out helps a little!

You are right - it isn't your Mom and you cannot get her back . On this Board we used to call the changed person "the Imposter", because it looks like Mom, sounds like Mom but it is NOT her. Her character, personality, knowledge, memory and feelings are gone or changed.

I admire your father, but at his age it is a terrible burden for him. How long has your Mom had Dementia? The average life expectancy after diagnosis is around 8 years. Can you or your father put up with this - and much worse - for 6 or 7 more years?

I am a strong advocate of proper placement, even if it means placing both of them in a facility together. Please find out what kinds of assisted living and nursing home arrangements are available in your state. There are group homes in some places, which are more personal and cozy than large instituitons, but in our case it turned out that a huge NH/rehab facility was just perfect for my Mom, who was 97 when she went in and 99 when she passed away. Until then I had lived with her for 5 increasingly terrible years.

Your family doctor and the Alzheimer's Association in your state can give you some help.

Meanwhile, please try hard not to feel guilty about your thoughts and feelings - you are only human, and you were robbed of the lovely party and your grandchild's first birthday by your demanding and impossible mother (or her imposter). I recall when how my Mom completely spoiled a Thanksgiving Dinner by pooping in her pants at the table - and insisting it wasn't her --- this was a year before she wound up in a nursing home.

Hang in there. There ARE solutions, they can be found, you can get your life back and your Mom and Dad can have an easier life - you just have to find the right place for them.

Good luck.

Love,

Martha

Martha, Thank you for responding! I now know someone out there really hears me! Yes, it is a terrible burden for my father. Prior to mom becoming the Imposter, (that is such an accurate description) I had seen him cry exactly 3 times...when his dad died, when his mom died, and when after 17 days we lost his grandchild born too early. But since Mom, I've seen him cry again and again. He cried when trying to pick out a valentine...he read one that talked about "memories" and just lost it right in the middle of Walgreens. It just gets too much to bear, as you well know. Most days he copes really well, but it is wearing on him, I know.

However, he does NOT want to move to an assisted living facility, much less a nursing home. Dad says when it is evident that he can no longer take care of her, he will move to a nursing home with her. But he is so strong...even though he is 89, he looks and acts 20 years younger...you should see his garden! And he's got me.

We noticed a change in mom about 4 years ago. She fell and broke her arm, and that seems to have exacerbated the problem...I understand this is common. As the years have passed, she has become increasingly confused...is beginning to become incontinent, but it's sporadic, not all the time (yet). Like I said, I know this is going to get much worse. I just pray the Lord will carry us through it with as much grace as possible.

Thank you for your support, for your kind words, for your sharing and for your wisdom. God bless you for being such a caring person!

Grammy Jannie

I truly understand your frustration. As hard as it may be you need to throw guilt out of your vocabulary and thinking. It is a frustrating and exasperating disease to deal with and none of us are super human.... just human. When you answer the same question 100 times and you are on question number 2000 for the day you tend to lose your grasp on reality. So no beating up on yourself because you found the end of your LONG rope. You have underestanding for your Dad when he does that so why don't you have the same consideration for yourself????

Your Dad's tears are an ourwards sign of the inward stress on him. I am sure he wants to stay home and take care of his wife. What we all want is for our loved ones not to have this horrible disease and not to have to make these hard decisions. But at some point your Dad's health and well being has to considered as well..... and yours.

I'm with Martha on proper placement. I truly believe that my Mom's depression is not only a product of her Alzheimer but is also a result of caring for my Dad with his vascular dementia plus her Mom with ALZ for years before. She swore she would never put Dad in a "HOME". She also said she would rather die than go to a "HOME" herself. She hid her inabilities and insisted on keeping Dad at home long after she was truly able to care for him. What she displays now is her frustration from years of care giving. My sisters and myself were headed down the same road. Now that Mom and Dad are happily settled in Assisted Living..... it is so much better. They had some rough spots adjusting but they are both happy and well cared for. Much more so than at home. I now see the wear and tear of years of care giving on Mom and also what it did to me and my sisters while we tried to keep Mom and Dad at home.

You always think you can do one more day and it is hard to see the deterioration when you are in the situation every day. We all think we can do anything for just one more day. It usually takes a major event to percipitate change. A fall, a melt down, a lost loved one will create a situation that is impossible to ignore. Just know when the time comes that it is not the end of the world and there is no reason for guilt. There comes a point when 10 caring professionals can do more than you can :)

Welcome to the board Jannie. This is an amazing place full of amazing people. Keep typing.... I will keep you, your Mom and Dad in my thoughts and prayers.

love, deb

Well hello, new person!

Welcome! I am especially glad to see a new "face" as I am the resident PITA (pain in the a**) trying to care for my father.

Like you, I have been resisiting the "put them in a facility" thinking. Sometimes, I think I am imagining how bad daddy is because sometimes he is so good. Know what I mean? But when he's "bad", he's bad. I, too, spend most of my time on the verge of tears. Frustration, fatigue, lonliness, isolation...it's not fun.

I have done something that might help you - either now or in the future - I called an In Home Care place, and the owner is coming over tomorrow to talk to me. They have folks that will come and sit with daddy, play the "do you remember" games (daddy is a WWII vet, and they have caregivers that are, too!), visit, walk with him...and all the while, I can come home and do what I need to do or just veg if that's what I need to do. I have zero idea of what this costs. Zero. And I don't care. I will write checks till the money is gone, just to know that dad is in good company. My only problem with this little deception that I am pulling on him (and he does not know this is gonna be a caregiver - he thinks they are my "friends") is that he might get grumpy and ask them to leave. I will have to cover that one with the owner...but anyway, what if you could hire someone to just go over and give your dad a break? He could garden in peace. Pray. Sing. Sleep. Someone to sit there and answer the 27zillion questions. Someone to play music with mom, or read to her...

A break. That's all I look for. And if not now, then soon, you will be too. Wouldn't it be nice to go out for ice cream with dad? Or heck - throw caution to the wind and make it dinner! Think it over, grammiejane.


Again - WELCOME! I hope to see a lot of you here...

...deb

Skimps makes a great point. Just a little break for you and your Dad would be a blessing Jannie. Check with your local ALZ organization for possible assistances or a Home Health agency. A couple of days a week just to let you and your Dad go out to lunch, work in the garden without disturbance, or take a nap could be what you needed in the short term. You might even ask your sister to spent a day with your Mom and you take your Dad out for the day. Who knows.... she might be a little more understanding :-) You and your Dad need a break, for an hour, an afternoon, or a day. That may do more than anything to renew the spirit so you can continue what you are doing now.

Those with dementia do have a hard time dealing with anything out of their routine. Large family function can be a nightmare. The noise, lights, all the people, being away from their familiar surrounding baffle them. If your Mom becomes accustom to staying with someone else at home then perhaps next time you and your Dad can go and enjoy the festivities and your Mom will be happy in her routine.

Just know that there is nothing wrong with help. Whether it be in home help so your Dad can sleep, somebody to come in a few times a week so both of you can have a break, somebody to stay with Mom while you attend functions that are frustrating to her, or placement in a facility. Your charge is to do what is best for not only your Mom but also for you and your Dad.

Love, deb

Oh, how I thank each of you for your responses! I know you are all giving me good advice, and I appreciate it so much. I think this site and you sweet people are going to save my life! I feel as if I've been enveloped in great big hugs, and I return those hugs with heartfelt thanks. I have read so many entries today...my problems are so insignificant in comparison to some. I hope I am able to give back to you & others what you have given to me...HOPE. I feel your caring and take courage from your offers of insight and help. Just got back from my folks a bit ago...we take and eat supper with them every night, and visit for a while. Mom was better...she's back in her familiar surroundings, so was calmer. Dad was cheerful...that always lifts my spirits. But the empathy and kinship I feel with you has been the highlight of my day. Thank you, thank you , thank you! ( I know I'm repeating myself there...taking after my mom? LOL) :-)

PLease vent away. I usually only come here to vent and I've felt guilty about that.

I took care of my mom for 4 years with NO help from any of my siblings and believe me when I say that no matter how much you love your mom your nerves will NOT hold up for long. My health is now shot and I honestly think I may be in the early stages of AD myself.

I finally had to put my mom in the nursing home because I just couldn't do it any longer. Unfortunately the siblings that had no time to help are now all over trying to cause trouble. When siblings and others aren't around much they just don't understand what the caretaker goes through.

I'm trying to adopt the "You can't please everyone so you got to please yourself" philosophy but it ain't easy when I keep waiting for the next shoe to drop, LOL.

What I'm trying to say in my own convaluted way is ... take care of yourself FIRST.

Mary Lou

I Know Exactly How You Are Feeling, My Mom Had Alz. For 10 Years And She Passed Away Last Friday. It Is A Very Frustrating Disease For The Family. Thank God Your Mom Is Not In Pain, It Is Just All Of The Family That Suffer Watching There Loved One Go Thru This Dreadful Disease. Hang In There !!!!

To Mary Lou...Thank you...I know your advice, "Take care of yourself first" is excellent advice, but as a woman with a family, we aren't used to that, are we. We are nurturers and put ourselves on the back burner to make sure everyone else's needs are met first, but I think you are right...sometimes it's ok to look to your own needs. Thanks for the reminder!

joandbro - so sorry about your mom. It is never easy, and you're never ready. My prayers are with you and your family.

grammyjane - I want to give you a "heads up" on something - DGabriel has without a doubt one of the best "checklists" I have ever seen. When she put this on one of my threads, I was stunned. Literally stunned. I just sat here and stared at it. I discovered, by reading this list, that I am NOT qualified to take care of my father full time. Oh, he can put on his own pants most of the time. Spoon food into his own mouth. Gripe and b**ch a lot. Walk a little, and enjoy the occasional meal at a restaurant. He watched tv and does not know what is going on, but seems to enjoy it. Sometimes, even be soooo sweet and loving, and enjoy life a little. But most of the time, he is a lot of work on all fronts. And just because I can keep his house clean and mow his vast lawn and cook him delicious food - it does'nt mean that I cannot do this without help. It doesn't mean that I am ANY kind of good wife or mother to my own family. It doesn't mean that putting my OWN needs at the very bottom of the list is ever a good thing.

Here is what she asked me - and now, I am asking you:

Can you:
-Offer your father 24/7 monitored skilled licensed nursing care?
[-Are you certified to perform CPR?
-can you offer him daily craft activities that are geared for his current physical level?
-can you take him on planned activities to local areas that will keep him stimulated?
-can you do "do you remember" sessions that help stimulate that area of the brain for the time that he is currently "living in?"
-can you offer him physical therapy to help keep him mobile and moving?
-can you maintain and keep his diet including extra caloric intact?
-can you offer 24/7 skilled care including night watch, who will also clean up the urine and poo?
-are you licensed to dispense meds?

This list changed my life. I hope it brings you some clarification, too. It's so hard when we love them so much, and want the very best for them - much like a mother with a child - and can't give them what they need. I know I surely cannot give daddy all he needs. I want to. I just can't.

Hugs -
...deb

To joandbro...I'm so sorry for your loss. Even though your mom is free now from the confusion and your family is spared further suffering caused by this hateful disease, I know it still must be hard to lose your mom. I've wondered how I'll feel if my mom leaves this earth before I do...in a way I feel I've already lost her. The mom that listened and counseled and taught and teased and advised, along with all the other things she did, has been gone for a while now. But I doubt I'll feel relief when her body actually dies as well. I'll probably wonder what I could have done differently to assist her, even knowing there's probably nothing nothing NOTHING. Getting old, as Bette Davis said, is not for sissies! Thank you for sharing, and all the best to you and your family.

Well I tell ya what ... I used to think that I HAD to take care of eveyone else first but now I have to look out for me. I wrecked my own health taking care of my mom for so long. I'm not saying to stop, I'm just saying to be very careful of your own health.


To Mary Lou...Thank you...I know your advice, "Take care of yourself first" is excellent advice, but as a woman with a family, we aren't used to that, are we. We are nurturers and put ourselves on the back burner to make sure everyone else's needs are met first, but I think you are right...sometimes it's ok to look to your own needs. Thanks for the reminder!

Skimp, actually that list belong to Ibake. I just agreed with everything she said and added my two cents.

Joandbro I am truly sorry for your loss. Losing your Mother is never easy. ALZ and all other dementias are absolutely "the long good bye". You lose so much of your loved one before they actually leave you physically. My Mom nor Dad are the same people they were 5 years ago and nothing can bring them back. Each stage is a loss until the shell that they were finally slips away and we miss what we have lost at evey stage.

Jannie, you are right. Those that are mothers and tend to become caregivers don't do a good job of taking care of themselves. We all need to remember to do a better job of taking care of ourselves. I know I am working on it.... sometimes doing better than others :-)

Love, deb

You are so right, y'all. This is SUCH a horrid, wasteful disease. And I can't speak for the rest of you, but I have certainly lost my dad - at least the dad I had - and now have to get used to the imposter.

I just took him indoors. It is 90 degrees here, and he was outside rearranging the trash again. He takes all the garbage out of the little dumpster-type trash can provided by the trash company, rebags it, hoses and cleans the can and repositions all the bags. Just between us girls (and guys, if any are reading), it drives me to distraction. Has always bothered me that he does that. Then, today, a revelation! Who gives a care? Let 'im do it! So I did. He worked at that process for an hour. I brought him a cold drink, a hat, and let him just go at it. He felt so proud of himself.

Normal behavior? Nope. If I saw my DH out there rearranging the trash can, I would call for help, knowing that he'd lost it. But for daddy? Perfectly normal behavior.

And it makes me refer to the DGabriel list (and ibake - props to you, too!). Can I provide daily craft activities and stimulating therapies? No, I can not. He rearranges the trash cans because I cannot keep him entertained at his level.

It's not fair. Just not fair. None of it. But we trudge on ahead, and hope we are doing what we need to be doing. It's an evil disease. And whereas most times, evil can be dispelled by prayer and faith, this is one occasion where the evil just robs us and robs us till it can't take anymore.

I miss my daddy.

Hugs to you all...

...deb

Ladies, I have been reading this thread and I can't believe how much we all have in common. Its just amazing how all of our loved ones behave in the same way. And how much we all try to do for them. I want so bad to fix this for Mom. We have always "fixed" things for her. Taken very good care of her. She deserves it. She is our Mom and a good one. Her health began to fail in 1990. Her mind in 2002.
She was in the hospital recently. Let me tell you it was 12 days of hell. She was never alone. That meant sometimes 14 hr. shifts. My sister and I are so tired and our health is beginning to show the stress we are under. My sister is younger but this seems to be making her sicker than me.
I am going to take everyones advice and try to take care of myself. I want to see my grandbabies. Go to lunch with a friend. Shop for clothes. Work in the yard without feeling guilty that I'm not with Mom seeing to her every need. She is in AL facility. They are so good to her and she loves it there. But she wants one of us there also. We have grandchildren, children, husbands and friends we just keep putting on the back burner to take care of Mom. ALL OF THE TIME. Everyday..........she pulls us in with this disease. I never thought I would feel this way but its just been too long and I'm getting to old to keep up.
I guess I've gone on too long but its how I feel today. Its does help to know that we are not alone in this battle. Geezzzzzz how I hate this disease.:mad:
Thanks for listening.
Chris

To all of you....I read and re-read your posts...I love each and every one of you. I feel like I have a whole new crew of best buds, and they all KNOW just how I feel. All your advice is so good. I had an epiphany when I read from DGabriel “So no beating up on yourself because you found the end of your LONG rope. You have understanding for your Dad when he does that so why don't you have the same consideration for yourself????” I had been feeling so guilty because I actually SHOWED my irritation in my voice. I’ve come to realize that that is ALL I did. I didn’t scream, I didn’t hit anyone, I didn’t act out in any way. I just said “Fine!” in that way all we women say “Fine!” when things are NOT fine. LOL ;) I am going to forgive myself. And I am going to try to talk with my dad again about at least considering alternative living arrangements for them. He’s a stubborn old man, and I doubt he’ll listen with an open mind, but maybe I can plant some seeds.

Again, thanks to all of you for the lifelines. The “Can You” List gives me a lot of food for thought. Thank you for that. I love hearing all of your stories. I pray for each of you, for your loved ones who are in the grip of dementia or Alzheimer’s or whatever has stolen their thoughts and memories. I’m so glad we can post our true feelings and have someone on the other end saying, “Yep, I feel that way too. You are not a bad person for not being able to do everything, It’s ok to have days when all you can do is cry.”

And I must tell you all…my mom is still a wonderful woman. She is cheerful most of the time. She is kind. She could be cranky and mean, but she’s not. She is just confused …and how awful that must be, to not be able to hold a thought. To forget the first of a conversation by the end of it and wonder what we are talking about. To hear “That’s your great grandchild” and not be able to grasp the meaning behind the words. God deliver us from a similar fate. I work puzzles, do memory tasks, exercise my brain in every way I can to stave off this disease. If this thread has helped you half as much as it is helping me, you are truly blessed! I know I prattle on and on sometimes, but it feels so good after bottling up everything for so long! Forgive me and keep posting. We need this.

I swear I could just bawl. You guys are the best. You really are. This is my lifeline. I come here every second I get just to see who has said what, and this b l o g is somewhere I will come every day, many times. For now and forever.

I had my first meeting with my first in home care company. Ladies, I absolutely hated this guy. I mean, within 3 minutes. He pulled up in a white Lexus, and asked me like, 3 questions about daddy, handed me a price sheet (yikes!), told me that if daddy told any caregiver that he wanted them to leave they would (no. not ok) and we went to meet daddy. Well, that was bad. I told daddy that this gentleman was here to help, and that we were looking at having someone other than me keep him company occasionally, and daddy shook the man's hand. Good. Good first step. I literally blindsided dad with this whole thing, so it was important for him to not be crabby, and it worked.

So the guy says to daddy, "You in WWII?" Yes, daddy said. "I was in the..." and daddy's mind went blank, as it does with this disease. I wait for him to find the word he's looking for, as it takes patience...and this slick guy "airforcearmynavy marinesairforce armynavymarines?" and I could see daddy just spinning. What dad was trying to say was, "Korea". So I straightened that out for him, and the guy says to me, "Well, I will leave you two to talk this over." And he left. Total time spent with dad? Five minutes.

Wow. Fired before he was hired.

Do y'all have any suggestions? Would the ALZ society have any suggestions? Where do you turn?

It is becoming imperitive that I follow the advice y'all have given - I MUST take care of me, my husband (God love him. What a guy. I am so blessed), and my young son. I must. I am no spring chicken myself, have MS and Rhumatoid Arthritis, and frankly, I too find myself showing irritation like you, Grammiejane. I am just desperate to do the things you listed, Grammie...work in my yard without feeling like I should be with dad. Steam clean my carpets without feeling like I should be with dad. Paint without feeling like I should be with dad. I am about 3/4 guilt anyway...I don't need more.

So...please hit me with any suggestions as to where I could find decent in home care. Is there, by chance, any way Medicare pays for any?

Thanks, y'all. I really do love you all. I don't know what I would do without you.

...deb

We all need to vent from time to time. We all feel guilty because we are not super human. We all get frustrated and need to step back. We all neglect ourselves for the sake of others. It's all in the job description. It's such a blessing to have others that truly understand to communicate with. I came into this form totally frustrated and have had some really down days. Yet every time I come here it is an uplifting experience that carries me through the down days. I thank you all for that. You are my sanity :) I do read my own advice but tend to hear yours better!!!

I adore my parents. My Dad is definitely my hero. They were wonderful, kind caring, intellegent, hard working people and very much in love. It is so difficult to see what this disease has done to them. But I also know, if they were in their right mind, that they would not want me to give up my life. So I try to balance now. They are well cared for in AL and at the moment all is well. So I go out with a friend and visit with my daughter and help my parents and recover my health that I let slide for too long. It is definitely all about balance.

Thank you all for being here and willing to share :-)

Love, deb

Skimp, don't give up on the first strike. Call them back and ask for somebody who has experience with ALZ patients. Evidently this guy didn't have a clue. Or try another agency, or call the ALZ association and see if they have ideas or suggestions or possible partners they can pair with your Dad. Don't limit your choices to a guy. Perhaps a lady would work since he is used to you being there. Keep trying

In order for Medicare to pay it has to be ordered by the doctor. You would need to get your Dad's physician to validate the need and I am not sure if it would be on a permenant or temporary basis. I know Home Health was ordered when Dad got out of the hospital (medicare paid for that) but Mom fired them. She told us they just stopped coming and I was clueless until I found the letter they sent her stated they were sorry the service was unsatisfactory.

Also check with Hospic. At some point they will give you several hours of service if there is ALZ and a complicating condition. The only way you know is if you ask. ALso ask at the department of aging or the hospital social services agency. We actually found our angel caregiver for Mom and Dad the last year they were at home from the Hospital chaplin. So don't give up.... keep trying..... be creative.... and ask everybody you can think of :)

Love, deb

To skimps46...white Lexus guy sounds like a real jerk who has no business being in the field he's in. I would have tossed him too. I haven't had to have dealings with any elderly health care people yet, but Lord deliver us all from uncaring people in it for the money. I have faith that there ARE good people out there. Good luck in your search! I am so fortunate that my dad is still so able to deal with my mom. I know he won't accept any help like that until he is ready, and I hope to be able to help him at that time. I'm sorry I don't have any answers for you, but hope you will keep us posted on your progress. Good thoughts being sent your way.

Guys, my mom had a good day today...I went to stay with her this afternoon while my dad went to the lumberyard with one of his old cronies (so good for him, and wish I could get him to do it more often!) Anyhow, when I got there, mom was sitting in her chair watching a cartoon on TV, just having the best time. It was a storybook kind of cartoon, and I sat and watched it with her, and we laughed together and life was good. There are still GOOD days! I count my blessings! :)

When my Mom needed someone to stay with her while I was at work, we applied to a licensed bonded agency. First of all they sent a registered nurse to evaluate Mom, her condition, the family (both my brother and I had to be there) and the surroundings. She spent one whole hour with us. Although Mom was already noticeably forgetful, she politely addressed most questions to her and waited patienly for an answer.

After the one hour interview including a physical exam for Mom, she left and we got a written report. Yes, they would accept Mom as a patient, the cost was so and so much, a nurse's exam every month, accompaniment to her senior center, swimming pool or anyplace else she wanted to go, the family would pay the carfare for the aide (this was in NYC, good public transportaion) and in the event of a difference of opinion, the aide would stay in the apartment until I got home from work, otherwise she would leave at 3 PM. I was almost always there by 2:30. if the aide was ill they would send a substitute (this happened twice and the results were bad, those stories are on the Board somewhere, dated early 2005).

Her duties were clearly listed and also what she was NOT responsible for. The first one lasted from October to January, and outside of accompanying Mom everywhere and making sure she didn't cross a street in front of moving traffic or get lost, she didn't do anything else. The second one lasted from January to June when Mom went to live with my brother, and she voluntarly did dishes, tidied up the house, etc. Both of them bathed Mom and washed her hair after the initial denials on Mom's part .. she told the aide ''my daughter bathes me every night" and told me ''The aide bathes me every morning" (so why did she smell bad?)

The cost was $19 per hour. It was shared by all 3 siblings. It seemed high - BUT - later we found out what high means, when Mom had to stay in the NH at her own expense for 3 months until Medicaid kicked in ... next to those rates, $19 an hour was cheap!

It was a good temporary solution, but Mom was far happier in the nursing home with many activities and friends her own age, her own room and TV and help doing everything from dressing to eating to finding something to do. I was amazed at the improvement in her quality of life once she was at the NH. It was more fun to be in groups than alone with an aide. Her social situation at the senior center had also deteriorated, since her old friends noticed she was 'getting strange' and avoided her.

Love,

Martha

Skimps,

We have had one go around with sitters for my mom, in her AL. It was through an agency, and it was a very mixed bag. The ones that really took an interest were in the minority for sure. Many slept overnight or continually went outside for smoke breaks. Some just sat and watched TV with Mom. For her, it takes someone with initiative to break through the fog of the AD to reach the old Mom.

We may need them again some time, and I too have been trying to come up with new ideas to find good people.....

:DThank you all for your posts on my search for in home care for dad. I am still struggling with it, and will let you know if I ever get relief there...

But here's some news! My daughter (age 30) and I were talking last night about Lexus guy, and about how so many of these "places" seem so slick and out for the $28 an hour they charge, and how infuriating it is. I told DD that if I were in control, there would be affordable respite care for our seniors, for special needs children so mom and dad could go out to dinner, and that the world of our seniors would be filled with sunshine and lollipops, so to speak. We talked about how WE want things for daddy. And guess what we decided to do? We are starting an in-home care business! She has the business knowledge, the capital and the ability to start the long process. I have the heart. Maybe a few folks right here in Denver will get some good care at affordable prices.

Now...if only I could hire myself...:D

It stinks to high Heaven that it's so hard to get compassionate care that is reliable and affordable. Just one more case of "It's not FAIR".

Hugs to you all...

...deb

God bless you skimps, and good luck with this endeavor. Sounds like you have a great plan, and the folks in Denver will be fortunate to have your heart!

Good for you skimps. Great ideas can grow out of total frustration. What a great idea. I actually know your feeling..... I wish I could hire a couple of me's and then all would be well :-)

Love, Deb

Thanks for the support, y'all! It's going to be a long haul - I guess starting a business is not easy, but it will work out. I feel so peaceful about this idea. It's high time that we treat our elderly like they do in Asian countries - with absolute respect and reverence. I am stunned at how pushed aside our elders are in so many areas. I cannot stand it, as a matter of fact.

Our parents should be exhalted. Even the ones that were not especially "good" parents. I have a TON of issues regarding my childhood - and I know that I could never do some of the things my folks did to me- but I also know that before mom died, she was old and infirm and dependant. Just like daddy is now. And no matter what water ran under the bridge, I will take the best care of him that I can summon within myself.

When the day comes and I am caring for someone else's parent in our new business, I will treat them with the same love and compassion I am showing daddy. What was, was. Now, we are in "is". And I will do my loving best.

Time to go feed daddy now. Grilled chicken, pasta alfredo and corn and walnut brownie with ice cream. His favorite! My love to you all...

...deb

I wish you every possible kind of luck in this new venture. Having been there yourself, you will create a kind of eldercare that people will want - your services will be in great demand. Just remember that every angle has to be covered so you won't be open to lawsuits - many AD victims have fantasies and illusions, or delusions, where they think they are being abused, robbed etc. These accusations are hard to prove untrue.

I hope it all works out for you and you still have the time you need for your dad.

I have been told there is no recession in medical and psychological care, and I'm sure eldercare fits in those categories....

love,

Martha

I'm in tears reading all your posts & this is all new to me. I've known my mom has had beginning alzheimers for some time. (Well we have yet to have it diagnosed, going to Dr next week). My Dad has obviously been hiding soooo much from me. Dad takes care of my mom, but he ended up in the hospital on Monday & she cannot stay alone, so here we are & only going on day 4 & I'm about to lose it. My Dad had a minor stroke, but may be out tomorrow. But, we are having a rough couple of days, my mom refuses to shower & has started to have b.o., she repeats things over & over. She has put on & taken off her shoes at least 50 times today. Is insulting to me, but then nice the next minute. Like I said, I've seen the signs for years now, subtle at first, but this is scary. My Dad always says the Dr's say she is fine, I know now he is not being truthful & in denial. My mom is 79, I am 40 with 2 children at home 7 & 6 years old. We have done no after school activities, because I can't leave my mom alone. My husband is understanding, but can't be off work. I went to pick up the kids at the bus stop & was a nervous wreck leaving my mom alone. When I got back she had opened up the inside garage door (had her shoes on & was looking for me she said), next step would be out the door. Have brought up subject w/ my Dad, but not too much since he is in the hospital for now, he is 80 & I think this is affecting his health. Everyone is right the guilt about what the next step is, is awful. I believe she needs to be in an alzheimers unit, but I know my Dad won't have that. It is difficult for me to take care of her at home w/ 2 small children at home. He may be out of the hospital this week, but this will be a recurring problem. Any advice for a newbie as to what to do next??? I hate this disease.

Oh dear Lainie,

You are right where we have all been. Every single one of us. The fright, the fear, the isolation, the sacrifices...I just about cried reading your post. Your life is my life - except mom died in 04 and I am all dad has.

If I had an answer for you, I would give it. I don't. I can only tell you what so many on this amazing site have told me - PLEASE DO NOT SACRIFICE YOURSELF AND YOUR FAMILY. There are posters on this site that are suffering intense health problems because they gave their "all" to thier loved one. I am one of them. And you know what? I am still doing 100% of the care for my dad. I fall into bed at night so tired I can't even pray. I spring up at 6am to get our son (aged 12) off to school, throw in a load of laundry, get the DH (darling husband - he is a saint) off to work, and then on to dad. I have not picked up my paints or set up my easel in 6 months. I have not had a bubble bath in 2 years. I have not played a game of UNO with my son in 6 months. My DH leads a sexless life because I am just tooooo tired. But I love my dad, I am all he has, and it's just the way it's supposed to be, I guess. I will do this till he dies, or till the NH is on tap.

Don't do it. Get help. Now. Don't wait till mom is like my dad and just adamant and ugly about having in home care.

Save yourself and your DH and your children. Please. And you can do it and still be there for mom and dad. But I am begging you - don't live my life.

Hugs and prayers to you and yours -
...deb

Everyone is right the guilt about what the next step is, is awful. I believe she needs to be in an alzheimers unit, but I know my Dad won't have that. It is difficult for me to take care of her at home w/ 2 small children at home.Lainie,
Skimps has it right. Is the Alzheimer's unit your talking about in an AL? My mom is in one after living in the regular AL for 3 years. We bucked the AL's advice to move her into it for over 6 months. We probably should have moved her sooner; thank goodness the AL was patient with us. The staff to resident ratio is much better now in the AZ unit, and the noise/commotion/etc. is much less than it was in the regular AL.

At each step in the process, I can look back and say that I imagined each "next" step to be horrible, when, in fact, the next steps have always been appropriate for Mom. It is so hard to get over the guilt of "putting Mom away in an AL," but the AZ unit at an AL can do all of the things (bathing, bathroom runs, meals, etc., etc., etc.) that would send your life into complete chaos and exhaustion.

I was also where you are now Lainie. Dad has had Vascular Dementia for years with Mom his primary caregiver. More unexplained things began to happen but Mom was able to hid her inabilities by telling us that all the bizzare behavior we were noticing was either done by day or because she was so exhausted from caring for Dad. She blamed the rest on Depression. Oh, how we wanted to believe her and did for a while. Then it became impossible to ignore. She finally agreed to cognitive testing to prove us wrong. It was worse than we expected. We still tried to keep Mom and Dad at home even though we all lived hours away. We tried in home care with one of the daughters staying with them on the weekends. There was one emergency after another. I could drive the 4 hours to their house in the dark in my sleep in close to 3 hours.... and did more than a few times. I spent more time at Mom and Dad's than I did at home. It still melted into tragic chaos and their time at home ended in a blur.

Mom had promised Dad he would never be in a "home". She wanted the daughters to promise her the same. She said she would rather be dead than be anywhere other than in her house and didn't want anybody in the house with them. Oh how she fought against placement.

I truly believed we could keep Mom and Dad at home forever. I thought I was super woman and that with four sisters we could do the impossible. It caused friction between the sisters and I ended up with heath problems because of it. I battled major guilt until the darling ladies here knocked some sense into my head.

Yet the time came when we had no choice. So Mom and Dad are now in a nice Assisted Living unit. They get their medication as they should, three good meals a day, activities that stimulate them, socialization that they were missing at home, nurses and doctor's on premisis, and there is somebody just down the hall to handle all the difficult situations. There was an adjustment period and they have good days and bad days but for the most part they are happier and better cared for than they could ever be at home. I don't sleep with my phone any more..... I actually SLEEP! I also have time to go to lunch with a friend, have time with my daughter, and I am getting my health back.

There comes a time when you have have to over rule stubborness and do what has to be done. Until then explore in home help for your Dad's sake and for yours. If that doesn't work know that placement is not the end of the world but might just be the beginning of a better life for all concerned.

But first you need a proper diagnosis. Ask for cognitive testing to see what what deficencies your Mom does have. We know that Mom retained very little of the verbal input she gets but does retain more of the visual in put she receives. It help because we know that showing her does much more than telling. Then you can figure out ways to better help her. You might want a neurologist or geriatric physican to find out exactly what type of dementia your Mom has. The more information you have the better you will be able to deal with the situation.

Also see if you can find caregiver training in your area. The Alzheimer Organization has an excellent caregiver training tape here. It is used by facilities to train their caregivers but a dear friend loaned us a copy to watch. It had wonderful hints as to how to deal with dementia patients that actually work. Again.... the more you know the better able you are to deal with the situation.

And keep typing. There are wonderful people here who have been where you are and willing to share their experiences. They have compassion, soft shoulders, first hand experience, and listening ears. They have absolutely been my sanity....

I am truly sorry you have to go through this horrible disease with your Mom. Know I will keep you, your Mom, and your Dad in my thoughts and prayers.

Love, deb

Thanks to those who posted & were so welcoming to a newbie. I'm typing this at 4am in the morning. So no need to explain to you all why I'm not sleeping. Not really looking forward to the start of the day. Thanks for listening. I feel like no one is listening to me. My poor Dad is in such denial, he can't even talk about this. My Mom is stuggling here at my house, she does seem better around my Dad when we visit him at the hospital. Maybe it's the change in environment at my house. I also feel some anger toward him that he has left me with this to deal with right now & has hidden so much from me. Next week is the last week of school & the kids have so many end of year activities that I'm involved in volunteering, there is no way I could go to these things if my Dad isn't out of the hospital yet. I can see I'm just all over the place in this post, not good at writing at 4 in the morning, LOL. Ok, going to try to get some sleep before the starts & getting the kids off to school!!!!!! Thank you again for welcoming me.

Your Mom is not in her familiar surroundings. History and routine help dementia patients function in a place they have been. When something unfamiliar surrounds them they become lost for a while. We saw this so many times in the LTC facility I worked. Mom was doing ok in the home she had lived in for 40 years but once she moved she seemed totally lost. My Dad did the same. He could find a bow, cereal, milk, and spoon at home but not at AL.

The same is true with being around your Dad. That is who she has depended on for her security for how many years? She doesn't have a full grasp of what is going on except he is gone which is disturbing to her.

I appreciate and understand your feelings of frustration. Keeping you in the dark was not melicious but self preservation for your parents. It is what they do. In your Mom's confusion she probably thinks she is just fine and the rest of the world has gone crazy. Your Dad doesn't notice or doesn't want to believe how impaired she is because it would rip apart life as they have always known it. It is also more difficult to see a change when you are in the middle of a gradually declining storm until it blows you over.

Hope you get some sleep. Do what you can and find you some help. Are there other family members you can call on? Friends that might be helpful even if for a short time? Never be afraid to ask for help. The worst you can end up with is right where you are.

Love, deb

Lainie...I'm so sorry you have joined the ranks of us with loved ones with this awful disease, but am so glad you found this thread...I started it a few days ago after a horrible weekend with my mom, as I just needed to vent. And the outpouring of support and understanding has been amazing.

I am at the beginning of this with my mom…she has been affected for several years, but it’s been a slow progression. She drives us nuts with the repeated questions, but the “real” problems (based on what I have read here and in other threads) lie in our futures. I wrote because I am finding it so difficult to handle just this phase of the disease, and wonder how in heaven’s name I’ll handle the “real” problems. Some days all I can do is cry. Other times I’m able to deal pretty well. But it’s so hard…as you know. I know things are VERY tough for you right now. It's difficult, it's draining, it's maddening, it's unfair, it's all consuming, it's hopeless, it's frustrating, it's heartbreaking, it's lonely, it's cruel, it's exhausting, and most of all ... it's so very, very sad for all of you involved.

I feel a lot of guilt when I become frustrated and irritated with my mom, because I KNOW she can’t help how she is. But these people who have been so kind to respond here at this site have made me realize that I'm human. I get tired. I get frustrated. I lose hope. .... and sometimes I’m just not able to keep it together. That doesn't mean I don’t love my mother - - quite the opposite. If I didn't love my mom sooooooo much, I would not be tired, frustrated, or hopeless.

I am trying to give myself permission to "lose it" occasionally. I am frustrated and upset with this terrible disease that steals her from us one brain cell at a time, not with my mom .... I can see it taking her a step further away each and every day. My "mom" is really already gone ... wherever their sweet minds go during this time - my mom went there; yours may be there too - - and what's left is this illness. It hurts. It's unbearable. And ... we do what we have to do to get through it. I stopped typing just now and said a prayer for you and your family. I hope you can find some peace and some comfort from the wonderful people who share this burden here as I have. God bless you.

Grammy Jannie

Welcome, Lainie. Been a few days since I posted. I am just at the beginning of all of this, too. It is scary, frustrating, maddening. I, too, feel the guilt when I let my frustration show in my voice. Mom has had a fairly decent couple of days. My best friend came over last night and stayed a couple of hours and I went in the bedroom, shut the door and just vegged in front of the tv for a bit. Was a wonderful break after a long day at work and coming home to the care Mom needs.
Skimps, I know what you mean about the YIKES! when you saw the prices. We have a sitter from an agency come for about 4 hours in the afternoons. She comes right before DH leaves for work and stays til I get home. Mom has been balking at her shower all week. Telling Annette she has been taking it at night. Tomorrow is a doctor visit with her primary so we can get the cognitive testing done and whatever other tests they do. I would imagine visit with a neurologist. Not sure. Guess we will find out.
As far as I understand, Medicare will not pay if they have any type of property in their name. House, car, bank accounts. IRA, anything like that. I will have to talk to Mom's broker and see if there is anything we can do with her small IRA. I am using some to pay for the care, and it won't last long at $18/hour. But, by all means, be sure and use an agency that is insured and bonded.
The sitter is coming on Saturday this week also, and DH and I are taking the day for ourselves. Some shopping for household things needed and lunch out. Sounds like heaven. My friend will come a couple evenings a week to sit with her. Doesn't get me any more sleep, but at least a little quiet relaxation. Better run, see if Mom wants any dessert. Thanks so much to all of you for the words of wisdom, and the encouragement. I can tell I have a long way to go! Love to you all, Susie

Hi Everyone,
You all are the the nicest posters of any message boards. You all really understand & don't judge, how refreshing, LOL!!! Anyway, Dad is not out of the hospital yet, maybe this weekend?!?! He has a procedure this morning to look at the back side of his heart, I'm told a 15 minute process. My mom & I will go to the hospital shortly. Yesterday was TOUGH, we were riding in the car & I went to make a call on my cell & mom says "you remind me of my daughter she is always on her cell". She truly didn't know how I was, how could I have missed this???? Have I been in denial too??? Why are they so against taking showers??? Good grief, the bra & shirt my mom was wearing I had to throw away, it was filthy, it was like some homeless persons clothes, seriously. We are going to Target for new bras, undies & some t-shirts. I would not be exaggerating if I ventured to say she hasn't had a proper shower in 6 months!!!! I dropped my mom off at the hospital yesterday to visit w/ my Dad & I looked at 3 different assisted living/nursing homes, just to see what my options are. I'm not kidding when I say one of them was beautiful, another was very nice & the 3rd was ok. These are definitely not the nursing homes of old. They had beauty parlors in them & the little old ladies were getting there hair done. I don't think they knew what was going on, but they looked so clean & fresh after their day of beauty!!!! Ok, now a little pitty party for myself, It's hard to see some of the grandmas at my kids school dropping the kids off or volunteering in the class & helping out. I feel stuck in some limbo land. I guess I feel w/ my small children I shouldn't have to be in this position yet, but I am. There aren't too many people around me that can relate to this....ok I'm done. Thanks for letting me vent. Thanks to all who said a prayer for me. Trust me I'm saying prayers for all of us that our families can get through this trying time w/ our sanity intact & some dignity.

Dr appt today. Doc said assessment much much worse than in September. She feels there may be something else going on. Today, blood draw for B12 levels, and thyroid. Then schedule MRI and visit to neurologist. Doc said this steep a decline very rarely happens with ALZ. I certainly hope it turns out to be something that can be fixed or at least regulated. Don't get me wrong, I know the ALZ is there. I'm just hoping to have my Mom for a little longer. So, even though tired, as usual lately, still worried and scared, there is some hope there, too.

Better run, get some dinner.
Thanks for all you guys do,
Love, Susie

Interesting that the doctor mentioned thyroid. Sometimes an imbalance in the thyroid gland's function can cause Alzheimer-like symptoms. The good news is that taking thyroid hormone daily can reverse thiat, while nothing reverses real AD. I hope and pray it will be something that can be cured!

In my mother's case the progression was very very slow .. from day to day you saw no change, only those who hadn't seen her for months or years were shocked by her behavior.

Good luck!

Martha

To Lainie...I know what it's like to be pulled in 2 (or more) directions...your dad in the hospital and your mom in this world of memory loss. Reminds me of a time a few years ago when mom fell and broke her arm the night before dad was scheduled for heart surgery. Mom was already showing the effects of dementia, and I had no help from other family members...they had lives to live, you know. So I had to rely on my church family to be with dad while I took mom to the bone specialist to take care of her. (Talk about guilt!) I had to act as if everything were fine around my mom, because she couldn't remember why dad wasn't there. I don't know how I kept my sanity that day. I just wanted to run...didn't matter where...at 58 years old I wanted to run away from home! LOL But somehow I hung in there, and allowed people to help me, and we got through it. But I know that feeling of needing to be two places at once, and feeling so helpless and out of control. You are in my prayers, Lainie, and I hope things settle down to a more managable level for you real soon. Hope your dad is doing ok. Hang in there.

To Susie...yep, we are all worried and scared...Hope there is something that can be done to help your mom's condition,,,you hang in there too.

To Martha and others going through this...we are so glad you are able to give us advice, information, and encouragement. Thank you!

I can very well relate to your experience Lainie. The midnight call that Dad (who has vascular dementia) was in the hospital with a stroke and it was bad. The realization that it was not a stroke but an over dose of Xanax administered by my Mom because she didn't remember she had already given it to him. Even after a proper diagnosis she told everybody she saw that Dad had a heart attack. It was a horrific week that ushered us into Mom's world of ALZ. I often wondered how we missed so much until that point. It was a combination of Mom's ability to cover and our not wanting to see. But at some point to become obvious and you have to do what you have to do. We tried keeping them at home but how then are in a nice assisted living unit and, even if they disbute it from time to time, they are better cared for and happier than they were at home. I will keep you and your Mom and Dad in my thoughts and prayers and hope you find the right situation for your Mom and Dad.

Susie, I truly hope that there is something the doctors can do to slow the rapid deline your Mom is experiencing. I will definitely keep you both in my thoughts and prayers.

I spent the weekend with my sister, pregnant niece (due in July), and my daughter clean up the summer cabin. It was a fun work weekend and a nice respit.

While I was washing windows and walls Mom stopped up the sink in Assisted Living, turned on the water, and went down the hall to put some laundry in the washer. Can we say ..... FLOOD!! According to Mom's account Dad was the one that turned on the water. My Dad is 87 and I know for a fact that he has NEVER washed underware in the sink!! I guess if Mom doesn't remember doing it them Dad had to be guilty :::shaking head::: At least this incident didn't turn into a disaster like Mom washing (oops no that was Dad leaving it in his pants) Dad's wallet! It is something almost every day. It is just nice to know help is just a few steps away now :-)

Love, deb

Hi Everyone, My Dad got out of the hospital on Sat & is doing very well. My mom is back w/ him at home, but things aren't much better. He said she's doing a lot of pacing & seems very anxious. We have Dr appt this a.m. to start on the road to a proper diagnosis. Not looking forward to that. I've talked on the phone w/ several other Asst. Living places, will check them out next week, once kids are out of school. On Fri. my mom asked if I had any brothers or sisters, told her my brothers name & she said that's my sons name. Then asked what is his last name, told her & she said, maybe we're related. Good grief, it just gets better everyday (insert sarcasm)!!!!! Thanks for all your well wishes & prayers, and letting me know I'm not alone. Saying prayers for all of you too.

I am glad your father is out of the hospital and back home Lainie. With all that has gone on in the last weeks it is not surprising that your Mom is still slightly aggitated. I think you are headed in the right direction getting a proper diagnosis and checking out our care options for your Mom and Dad.

I had to smile at your sarcasm... Ain't that the truth!! My Mom wants to go back home. The home she left. She keps telling us that Dad wants to go home too. Yet if you really listen to Dad he wants to go back to his child hood home. She has totally lost the 54 years he spent in our home. I first picked it up when he said he needed to milk the cows. We didn't have cows living in town! Sometimes you have to really listen to understand where they are. I have been luck, he still remembers who I am and my sisters are, but he has lost the grandchildren. He occassionally calls one of his daughter's by his sister's name but there is a striking resemblance between them.... just 30 years difference.

Good luck this morning and hope all goes well. Let us know what you find out.

Love, deb