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Alzheimer's Disease


Lubbock TX Chick

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I'm just curious if anyone here has a loved one suffering from Alzheimer's or other dementias. If so, I would love to chat. I know, there are other websites and forums devoted to Alz, but I was curious if any of my fellow Greenleaf-ers deal with this. The Alz boards I've seen are SOOOO negative and discouraging. And this disease is bad enough without wallowing in attitude. I don't mean to sound harsh, those boards have a wealth of information, but you have to wade through a lot of pity to find it.

So here's the deal. Hubby and I have his mom living with us. She is 80 yrs old, and was diagnosed 2 years ago. She lived independently since DH's dad died 15 years ago, and was fiercely against accepting any help. So for 2 years she lived alone, but had some care services looking in on her (Meals on Wheels, a home occupational therapist, and a house-call physicians assistant doing check-ups), and we traveled from RI to NJ to look in on her every couple of weekends. In January of this year her PA called us and advised that she really couldn't stay alone any more. Locked herself out of the house a couple of times, forgot to take her meds, etc. So we went down to Jersey and basically "kidnapped" her. We went for a "visit" and said, "Hey mom, why don't you come stay with us for a while?" Long story short, she lives with us now and we know there is no way we can ever let her go back to her house, because she will refuse to leave.

So now we are trying to figure out what to do next. We have a home companion who stays with her on weekdays while we are working. I am considering leaving my job to stay home with her full time. This is where my big dilemma lies now. We are paying more for her home companion than I am bringing in, so it makes economic sense for me to be her caregiver. I'm just trying to decide if I have what it takes. We are thinking and praying about it and just trying to figure it all out.

I would love to hear from any of you who have had similar circumstances caring for a family member with elevated needs. I'm asking you guys on this fourm because of your well-documented attitidue of love, caring, and support. Sorry this post is so long, but thanks for letting me pour my heart out.

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Jerri, this is really a tough one.

My aunt (by marriage) has Alzheimer's. She's 72. Both of her parents had Alzheimer's. Her children put her in an assisted living center about a month ago. She did not want to go but didn't fight it. She hates it and cries herself to sleep every night. She says she never goes anywhere and that no one talks to her. But one night, her son dropped in and 'checked up on her' while she was unaware of his presence. She was happily playing bingo. Another time she was in the common room listening to music with a few other people. So, in reality, she wasn't left alone all the time -she just didn't remember the things she'd done. But her memory isn't totally gone and when she's lucid, she's very unhappy to be in a strange place with strange people. She's a loner who would prefer to be back in her own home.

My mother has spoken to her on the phone quite a few times and she's seemed like her old self. She and I are going to take my aunt out to lunch this week. I hope we can make her happy for awhile.

Sorry that I can't give you any useful advice. Is there someone you can talk to about the situation - a member of the clergy or a counselor who works with families dealing with the disease? I wish you strength and a good resolution to your dilemma. Please let us know how you're making out.

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Jerri, you are a wonderful person! There aren't many people who would welcome their mother in law into their home, especially if she has medical challenges such as Alzhiemers. I'm certainly no expert in the field, but once upon a time I worked for two years in the Alzhiemers unit of a nursing home so I know a little bit about what you're facing. It's a little intimidating, but with love and patience on your part, you'll have what it takes.

It's not always easy to care for an Alzhiemers patient, but it's not all that difficult either. The main thing is keeping an eye on them to make sure they don't wander off or put something on the stove and forget about it. Maybe you could buy her a charm bracelet that jingles to help you keep track of where she is in the house. There may come a time when you'll want to consider chain locks on exterior doors to give you time to catch up to her if she tries to go outside on her own. You'll spend a lot of time repeating yourself and explaining things over and over, but patience is the key to that. If she becomes disoriented, it's always recommended that you try to help her regain reality by telling her again where she is and what she's doing.......but if it distresses her or frustrates her that she can't remember, don't push the issue. The most important thing is keeping her as calm and contented as possible. Alzhiemers patients can be very sweet and loving but I think we can all relate to how frustrating it would be to constantly forget things.

You don't want to treat her as a child, but in a lot of ways, that's how it will work out. Try to help her maintain her dignity as much as possible. Alzhiemers patients respond well to routines, so create as much of a regular daily routine as possible and include trips to the bathroom about every hour. Incontinence is probably one of the most humiliating aspects of this disease but hourly bathroom breaks can help prevent that. Music can be very soothing and so can repetitive activity. Even a rocking chair can satisfy that need for repetitive movement. Creativity is also helpful and if she's receptive to it, crayons and a coloring book are often a favorite activity. Television shows or old movies that are familiar can also be comforting.

You've probably heard a lot about Alzhiemers patients becoming combative or violent and while that does happen, it's doesn't effect everyone that way. The disease tends to have individual traits for each person. If by chance she does begin to become combative or physically aggressive, that would be the time to consider a care facility since it can be a bit much to handle. However, I've known more Alzhiemers patients that were NOT combative than those that were so don't give up hope about that. One of the sweetest women I've ever known was an Alzhiemers patient and she was as cuddly and loving as a kitten. She had times when she was sorrowful and cried a lot (and responded well to someone holding her hand or rubbing her back to soothe her) but even up to the end, she was never combative.

Most of all, don't forget to take care of yourself and be sure you have time alone or away from the responsibility. Respite care once a week (or as often as you need it) is something you definitely want to consider so you don't wear yourself out.

Hugs to you dear. There are a lot of shoulders here for you if you need to talk.

Deb

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My DD passed away last November with Alzheimers. The disease is an awful process of watching your loved one slowly get worse until you feel that the impending death is a welcome relief for your family member.

My father lived by himself until two months before his passing. He also drove, would get lost, drive either too slow or too fast. When he would lose his check book, I had to find it for him. If it couldn't be found immediately, he would put a stop payment on any outstanding checks. Several times he had to pay a fee because of bounced checks. He thought he had to have cash in his pocket, go cash a check and hide the money. Then he would go back to the bank for more money. After his death, I found about $2000 that he had hidden. He was a retired police officer and kept insisting that the coroner had one of his personal pistols. The coroner's office knew that they didn't have his pistol when I called them about it but he kept insisting they did. It was supposed to be a .25 caliber. Dad never owned a .25 in his life. He eventually started to hallucinate, either seeing headless people or having conversations with someone we knew to be deceased. He refused to allow anyone to live with him, he wouldn't live with any of his 3 daughters and he refused to go to an assisted living center. He was very strong willed until the last. Fortunately, I lived close enough to him that I could check on him several times a day. I had the sad responsibility of having to admit him to the hospital for evaluation and then admit him to a nursing home. He was there less than a week when he developed pneumonia and had to be hospitalized. His living will instructed the doctors and family that he was not to be kept alive by artificial means. The hospital just kept him fed and pain free from that time on. We were told that he would probably develop pneumonia again and he did. He was in a nursing home for 3 weeks.

Alzheimers leaves the person no dignity but it does seem to differ with each patient to some extent. There may be a support group in your area that could help you. Their office will be listed in your phone book. If not, you may be able to check with the doctor about one.

If you need to talk, feel free to pm me. I don't know all the answers but at least you can vent if you feel the need.

Good luck, you're in my prayers.

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My Mother had Parkinson`s disease and she did fine until it started to effect her mind. She lived with us for almost a year until it became apparent that I could not take care of her anymore.

She was hallucinating, swearing at the kids (my mom NEVER swore), and she kept falling down. Strong italian genes I tell ya..She never broke anything..hips, legs..nothing.

I took care of her 24/7, she had a home health aide come in once a week who helped me with laundry, she had a physical therapist and a visiting nurse came every week also.

Come to find out later that she had a stroke and she was not digesting her meds correctly anymore and she would have overdoses (that happens with many elderly bipolar patients).

I am proud of the care that I gave her. She had diabetes and I was able to keep it under control. And she had not ONE bedsore the entire time she lived here.

The one thing that killed me...She was calling me Joey. Her youngest sister`s name was Josephine and she thought I was her sister in the end. I used to answer to that name because it confused her.

You have to have two kinds of strengths. The strength of the daily tasks of taking care at any and every hour. To give love and attention even when sometimes they are not very nice.

The other strength you have to have is inner. To know when you cannot do it anymore. You may realize that she has to be taken care of elsewhere and that is where you need your inner strength the most.

I took lots of flak from my sibs for having her put in a nursing home but heck..they werent there to change her, feed her, pick her up off the floor. I was and I do not regret that decision for one minute.

You have lots of support and knowledge right here..so you vent away when you have to. You will be here to give you big hugs.

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See, I just knew I would find support here. :huh: Thanks for the replies.

Twilight, we tried to go the assisted living route 2 years ago, but MIL wasn't having it. We probably could have forced the issue, but at the time we were living in Texas, and she was in New Jersey. We knew that if we placed her somewhere against her will, there was every chance that she would walk out of the place and then what? Get hit by a car, or get lost and possibly injur herself.

Now she is beyond being able to do assisted living. As Deb mentioned, she really does need supervision 24/7. And Deb, you're right. She's not a child, but she is child-like. It's not an easy transition. I hope she does not become combative. But even if she does, she's only about 4'9" and can't weigh more than 110 lbs, so I think I could take her. (Kidding!! You did say I need a sense of humor, right? :( )

I think my biggest challenge right now is reading her emotions. She's originally from Japan, and let me tell you, that legendary Japanese stoicism -- it's real. (Sidenote: hubby is 1/2 Japanese and 1/2 Irish, which he says makes him a stoic hot-head. :lol: ) I have never seen her shed a single tear, even when she's incredibly upset. It's hard for me to ever tell if she is feeling sad or depressed, because she simply won't let that been seen. She does express happiness and joy, especially when she's trying to talk me into having a baby. (That's a regular topic of discussion between us, but it ain't gonna happen! B) ) But beyond that, I have to gauge how she's feeling by reading her facial expressions because she sure isn't going to tell me how she feels. Those Japanese, they talk about their feelings even less than we WASPs do. (Hope I'm not offending anyone.)

Anyway Deb and Gayle, thanks for all the info and advice. There is a good support group close by and I'm hoping to be able to join that group. Gayle, it sounds like you did everything you could to honor your dad's wishes until the very end. I hope you have some comfort in that.

Heidi, I know what you mean about your mom not knowing who you really are. Half the time my husband is her son David, and about half the time he's her brother Ruiji. I'm just some nice lady who stops by every night to help out. She hasn't known my name for a good year or more, but that's no big surprise since I only met her about 5 years ago, and married her son 3 years ago. She probably already had the disease by then. It gets further complicated because my husband, his father, and his son all have the same name. So when MIL talks about "David" it's hard to know which one she's referring to, especially because at any given time her reality might be in the present or someplace in the past. :p

Anyway, thanks to you all for listening. Will keep you updated on what we decide to do and how it goes. We are currently gathering the paperwork we need to petition the court for guardianship. At least then we can make decisions for her that are in her best interest.

Mini hugs and mini thanks,

Jerri

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Jerri,

My mom had Alzheimers. My dad cared for her. He did have someone come in twice a week so that he could get out for a while. Respite care is very important. I give you a lot of credit for taking care of your MIL. Get as much information as you can about the disease. It will help you out tremendously. Everyone here has already given you a lot of great information and advise, so I am here to tell you to feel free to contact me if you need to. It is a devestating disease, and very difficult to watch a loved one go through it. A good sense of humor will help you through this difficult time.

My thoughts and prayers are with you!

Kathy

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Hi friends. I saw the post and I wanted to chime in about this topic. Not that I know alot about the subject, just that I've had some experience in it. My grandmother had some sort of Alz/demitia. Not sure which, I don't think she was ever truly dianosed. She was about only about 55-60 when it started around 1985. I was only 15 at the time.

Unfortunatly at the beginning stages our family was all dealing with my aunt (her daughter/mom's younger sister) who got sick and diagnosed with bone marrow cancer. My aunt rapidly got worse and died within 4-6 months. I don't know if this traumatic even helpeed trigger her disease or not. Less than 2 yrs after that Grandpa moved them down to FL to retire. She was practically cut off from her family. My mom and her remaining sister and brother didn't really know what was going on because he never told anyone or asked for help. He took care of her for the most part and My mom and aunt came down and tried a to help take her to drs and stuff.

In the early 90's I moved to FL and actualy lived with them for a while. I was about 19-20 at the time. That was a very difficult time for me. Grandma didn't know who I was. According the nurse at her "adult day care".. the theory was I was just some woman in her husband's home. Grandma would pace in the from hall between the front door, living rooma dn hallway to the bedrooms. When I tried to walk around the house she would run at me and litterally PUNCH me, just once and walk away, then start pacing again. I had friends that would come to the house and she did it in front of them too. The strange part was if it was a MALE friend... she KNEW WHO I WAS!! She would walk over and put her arms on my tell them "This is my grandaughter. I lover her." Grandpa being the a** that he was (not ever seeing it happen) basically called me a liar.

My grandfather is a stouborn A** of a man who has had "outs" with all of his children for LONG periods of time. When the HIPPA laws came into effect Grandma was in a nursing home. He quickly took advantage of it put a stop to any and all family being able to call to find out how she was doing, being that we were all in NJ. The last time I saw my grandmother was over 4 years ago. I was visiting my cousin in Orlando FL. I rented a car and drove 2 hours in pouring rain to go see her. She was so thin from not eating (I remember her bast a a short portly woman), but the nurses told me that her "health" was decent.

My Grandmother passed away last year after over 20 years of the "disease". I wasn't told about it until almost a week later. There was no service for her. About 9 months later my grandfather showed up at my mother's house on a Sunday afternoon. He was in their driveway when they came home from church. After about 10 years of not speaking to my mom (for what ever assinine reason of his) he finally decided that "life is too short" to not speak to them any more. My mother says sh has put it all behind adn "forgiven" him. I cannot imagine doing that. I see him at her house occasionally and the only thing wrong with him that I can tell is his hearing.

June was the anniversary of her death and they met at the Naval Cementary for a brief "memorial" of sorts. My Mom didn't invite me .. probably becasue she knew I'd be way to mad at him to be able to grieve properly for my grandmother.

By the way my father's mother has it as well. She is still alive and in a nursing home in upstate NY. She had 11 children and over 50 grand and great-grandchildren. The last time I saw her with a bit of her faculties she looked me and said "Which one are you?" when I said "Hello Grandma." Kind of makes me chuckle only because I think any grandmother withthat many grandchildren might have said hte same thing! It was about 5 years ago. I have seen her since then and she has gotten much worse.

So I have it on both sides. I wonder if it skips a generation??? What is the chance that I will have it? My mother is now around tha age whne HER mother started showing signs. I've asked her on many occasions if she hasever looked into testing for signs of it in her and she change the subject.

Sorry. Probably not what anyone wanted to read as it isn't very informative and not helpful at all. But I really needed to "say" it. I've had no one to talk to about any of this for 20 years. I was too young when it started and time had gone by for so long without having contact we were all left to deal with it on our own. I've cried through writing this whole post and feel a bit like I've done some grieving.. so thank you for reading...and good luck to you. I wish you all the best.

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JamieMarvon,

I'm glad this thread gave you a chance to vent and grieve. Please feel free to PM me if you want or need to talk more. I have learned soooo much in the last few months. One thing that I think often gets overlooked is the toll this disease takes on the victim's family. It's really a disease that impacts everyone who cares about the dementia patient.

Your story is a bit like my first experience with dementia. My grandmother also had it in the 80's and 90's, and because I actually grew up living with her I lived through much of what you experienced. She was noticeably sick when I was in my high school and college years. I thank God that she never got combative with me, but she would pace the floors for hours, constantly worried about what was taking my grandfather (who'd been dead for 10 years) so long to come pick her up. I was of course much younger then, and had a very hard time dealing with it. Geez, being a teenage girl is hard enough without mixing in the turmoil of watching a loved one slip away right before your eyes. I remember feeling relieved for her when she passed away, just because she wouldn't be constantly and helplessly worried.

Do you think it would help you get some closure if you had a chance to visit your grandma's grave without your granfather being there? Either go alone or with someone you trust. Place some flowers, tell grandma how much you love her and miss her, but also how glad you are that she doesn't have to live in that horrible fog anymore. Whether you do that or not, do try to find what will give you some peace and healing.

Jerri

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Kathy, my condolences on the loss of your dear mom. And thanks for chiming in with your support. You are so right about the importance of respite care and the need for a caregiver to look after oneself along with looking after the memory impaired person. Fortunately we live in this internet age, and there are so many resources available. I'm still discovering how much support is available, but I love this forum community so much, and I knew I could count on the loving, giving folks here to wrap their collective cyber arms around me.

I feel like I have a home here. :wave:

Jerri

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I read an article in our local paper about a woman that was diagnosed with Alzheimer's. She was in her early 50's so the disease doesn't affect just the elderly.

My father was the 3rd of 5 children and the only one that was ever diagnosed. His doctor told me that it does have a tendancy to run in families but it may not affect me.

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I read an article in our local paper about a woman that was diagnosed with Alzheimer's. She was in her early 50's so the disease doesn't affect just the elderly.

I had a conversation last week with the moderator of a local caregivers' support group. She told me there is a woman my age (early 40s) in the group, who is taking care of her husband (mid-40s) who has it. That hit pretty close to home.

Another crazy thing is how differently it seems to affect different people. There doesn't seem to be a way to tell anyone what to expect.

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This is a very safe place to lay out your worries - we will listen and empathize, and offer help if possible. :wave: I don't have any words of wisdom, but I can say that I know a little bit about what you're dealing with.

My DH's great aunt had dementia, and thought that our two children were her niece and nephew. So my son was called his father's name, and my daughter was called by her aunt's name. They were young at the time, and felt a little awkward and shy about it - but they were old enough to understand that she was confused, and that she felt happy to think she knew who they were. She lived mostly in the past, and would talk about meeting her husband (long dead; I never had the chance to meet him) down at the dock - they used to own a cottage. She would get extremely upset if you tried to tell her that all that was in the past. We found that it was best to go along with whatever she said. She had other serious health issues and was in a very good nursing home. My MIL visited her every day, and we saw her every week or so ... sometimes she knew who my DH was, but I don't think she really knew who I was - although she pretended she did.

The sad thing was that she had always been sharp as a tack - she was a very savvy business woman, and quite a character. She and her sister (my DH's gramma), ended up living together for many years, as both had lost their husbands relatively early. They were very close, and we used to visit them every weekend with our little ones. They both had a good sense of humour, and those visits were lots of fun for us all. When Gramma died suddenly, Aunt W. became ill very fast. She began hallucinating, and not eating, and then the dementia set in. We were never sure if it was actually Alzheimer's - the nursing home said it was dementia.

Even so, there were good visits. She had always been a real whiz at croquinole, and that didn't change. She loved to beat the pants off us all! She got her hair done, and her nails done regularly, and really did keep her dignity.

I know that you will be facing a true test of your strength - both physically and mentally - and that you are already being tested - but I hope that we will be able to help you through. Some people like Deb, Gayle, Kathy and Heidi (and others) will have advice to offer, but we will all be thinking of you, and sending you healing vibes, and caring.

Take it one step at a time, Jerri - and know that we will share your journey, every step of the way.

Jaimie, I hope you can take Jerri's advice and visit your grandmother's grave. If that's not possible, maybe you could write her a letter? It might sound strange - but writing a letter to her can let out all the emotions that got trapped inside you. Posting here was able to give you some relief, and I hope that you can take it a little further. It's never too late to heal a hurt. :wub:

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Well, we are still thinking about all the options for the best care arrangement for MIL. No decisions at this point. We had a doctor's appointment today. She did fairly well, but just getting dressed and going out was a major feat. She was exhausted when we got home. And our doctor informed us that she is moving away, so we will be getting a new doctor. I'm not looking forward to that, because making major changes in the Alz patient's life can sometimes cause problems. However, since we only see the doctor every three months or so, maybe that's not enough of a "routine" to make a difference.

On the upside, she's really getting better at using her walker. She has a hard time remembering, but once we put it in front of her she really does seem to get around better. Without it she can barely get around.

Last night DH and I were talking about the various options and how we just wish one of them were easy. Hubby banged his hand on the table a couple times and said, "Where's that darn 'Easy Button'? Time to go to Staples!" Thank goodness we can still make each other laugh.

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My BIL's mother had it. His father hid it from everyone. Whenever anyone came over he was very careful to monitor everything she did and said so no one knew. Then he dropped dead from a heart attack. So, since no one knew she was ill, it was quite a surprise to start getting calls from the police about her wandering around in her nightclothes, or on the other side of town where she had drove, then lost her car and way. She hid stuff all over the house and in the car. In retrospect and going by symptoms, everyone figured she had had it for quite a few years. An aunt moved in, but she was so bad they had to put her in a nursing home. She could remember stuff from years ago like it was a minute ago, but couldn't remember anything new or from about the last 10 years.

I wish you much luck and patience.

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As I mentioned in an earlier post, my Mother and I took my aunt out to lunch this week. The assisted living center she lives in is beautiful and there are staff strolling about, visiting with the residents, chatting with visitors, stopping to play cards or work on a jigsaw puzzle. My aunt says she kind of ok with being there; she's getting used to it. It bothers her a bit that she has to sign in and out when she leaves the premises. But she also agrees that it's important.

We talked about her feelings and her state of mind. She says her memories of long ago are sharp, but not always of recent events. (I know that's very common.) As an example she said, 'I'm not even sure if I ate lunch today.' This was after we returned from the restaurant. She's adamant about wanting to go back to her house to see if there's anything that she wants and - I guess - to see what her children have done with her belongings.

Anyway, this is just to show how one Alzheimer's patient is getting along. We all know she won't get better, but at least she's settling in and it made my Mother happy to see that she's in such nice surroundings. (This aunt is my Mom's sister-in-law and a widow.)

Best wishes to all of you out there dealing with Alzheimer's.

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Hi, My mother has dementia really bad. She is in a nursing home but calls on the phone all the time. She rarely makes any sense. I do not try to explain things to her any more, I just go along with her conversation. Today she called to tell me they were going to take her away someplace but she did know when or why. If I told her that was not true, she would cry saying I do not believe her. I cannot explain so I go along. There is a lot of guilt. I try to push it out. I am physically and emotionally unable to take care of her and she cannot be alone. I really can't talk about it now but if ever you need someone to talk to just pm me. Blessings, Linda

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I just want to post a quick note to thank all of you who've responded. Linda, I'm getting close to understanding what you are going through. Please PM me if you need to talk. From everything I've read, at some point all we can do is give them the healthiest living arrangement possible, and do what we can to make them feel safe. You're in my heart, as are the rest of you who are dealing with this and similar illnesses. I'm glad we can have a support network here.

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Well, after much thought, discussion, prayer, discussion, pondering, discussion, and thought . . . it looks like I will not be leaving my job to stay home with my MIL. I want to, and I think I can do a good job and give her a good level of care, but it seems my DH just can't get comfortable with the idea. So we will continue to give away what little money she has to a daily caregiver who amounts to little more than a sitter.

And I will continue to have to ask for time off from work to take care of doctor's appointments and such. Along with all this, I am getting a new boss as of tomorrow. My current boss, who is the greatest in the world, bar none, is moving to a different department. He's been completely supportive and absolutely flexible through all this. I can only hope the new guy will be too. And in case you're wondering, yes, I do have to admit that the changes happening at work have a little to do with my desire to stay home with MIL. But only a small part. In my heart I feel called to spend as much time with her as possible, as she is slipping further and further away each day. That's the primary reason I was hoping to stay home.

So I will continue to juggle working full time and using evenings and weekends for housework, laundry, errands, grocery shopping, pharmacy pickups, and tending to MIL. I feel like I need to just suck it up and accept that my life will not be my own until she's gone.

Sorry, I know I sound bitter. I'm just disappointed about the whole situation and need to vent. They say "to everything there is a purpose." Can someone PLEASE help me understand what purpose can possibly be served by Alzheimer's disease??????

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Can someone PLEASE help me understand what purpose can possibly be served by Alzheimer's disease??????

I do not know. Maybe it means we should spend as much time as we can with the ones we love. Share all of your stories with your children and grandchildren while you can. I was fortunate. My Mom and Dad talked about their lives plenty to all of us kids.

Jerri find out from your jobs H.R. department if you can file for FMLA. You will not get paid for the time off but it will protect your job for the amount of time you have it...I cannot remember how many weeks you get but you can use them in hour increments (like for dr appointments) or a whole day, month, etc.

Remember to take some time for yourself...We still have plans to meet and go to Mystic (I am getting in touch with Dawn to see if she wants to join us).

You vent all you want on here...we will gladly listen.

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Well, I'm feeling somewhat better. Still frustrated about MIL's condition, but more accepting that there's not a whole heckuva lot I can do about it, other than keeping her safe and cared for. I want to say thanks for letting me vent. I pretty much felt sorry for myself most of today, but that's lifting. I'm thankful that I can come here to get these things off my chest. Here's a novel idea: I'm hoping my next post will be miniatures-related! :rofl:

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