I want to get this off my chest... (sorry it's long)

@AmbiePam (94073)
United States
October 4, 2010 5:49pm CST
Not literally. I sometimes forget non native English speakers think these phrases are odd. Anyway, I've alluded to some problems going on with my mom over the past year. We got a diagnosis quite a while ago, but I just didn't want to say anything, other than to a couple of people. So here is the deal. My 51 year old mother, has Alzheimer's disease. Now having Alzeimer's is bad enough, and I know a lot of people here have had loved ones with it. But she's 51! Problems began about four years ago, and she had to quit her job teaching at a local college. I completely understand if you stop reading now and pass on this discussion, I won't expect a lot of replies. I don't know how many tests were done, so many theories were thrown around, and many doctors who are highly regarded in their fields checked her over, from head to toe. And she has it, she has Alzheimer's. The thing is, she remembers who she is and her past. She has forgotten things like how to dress yourself. My dad found her house keys (no, we do not let her drive) in the fridge. She can't remember how to do laundry. I once found two pairs of dirty underwear in the dryer. She hadn't washed them, she just put two pairs of them in the dryer. And she couldn't figure out why that was weird to us. So I do their laundry now. I don't live with them, but I guess their home is the place I spend the second most amount of time. She has had violent outbursts, but only with me, not my dad. She came up behind me and shoved me into a wall. Thankfully, she has not had any outbursts like that in awhile. The mother I knew, the one who was my best friend, is gone. That's just a fact. It's frustrating because the things we know she can do, she won't do. That's just the result of the change in personality this disease brings. She was a wonderful mother. She was amazing in everything she ever did. And she was the perfect role model for anyone out there. All I can do is love what I have of her. Patience is hard to have because unless you've been here, you don't know. For instance, she wakes my dad up every two hours and asks if it is time to get up. He hardly sleeps anymore. And he is not a complaier, so the fact that he talks to me about it tells me how tired he is. She gets up in the middle of the night, changes into her regular clothes, goes to the bathroom, comes back out, and changes back to her bed clothes. All with the light on while my dad is trying to sleep. And she'll do it a couple of times. And she knows what she is doing. She just doesn't realize it is odd. And she gets pretty cranky if one points it out. Sometimes showing extreme patience isn't enough and she lashes out verbally. That's pretty tough too. I have had some people say, how could God let this happen? Well, my mom, me, my parents...yes, we are all Christians, but who the heck ever told anyone that Christians wouldn't suffer too? God didn't make this happen. It's called life. And I'm not living this life on earth just for the now. I'm also living for the life that comes after. I am so thankful for the many years I had with my mother pre-dementia. Now, this is a personal discussion, so I would appreciate those who like to belittle people's faith and say God's evil or whatever would save that for a discussion about religion or politics. This about something I want to share, not provoking someone just to get a reaction. Some blessings have emerged from this mess though. My dad and I are closer than ever. You might have noticed some posts this past year when I brag on him or something. Our relationship was never great, but it was passable back then. Now, I'd say we are pretty good buddies. Also, my mom got on disability. She's worked most of her life, and the past several years have been pretty tough on my dad. He's worked himself into the ground to make ends meet for them (which was pretty darn hard before my mom had to quit). And here is the kicker, it took 2 months to get her on disability. Two months. That is unheard of. It took me five years to get on disability. There is a BIG difference though. She's 51 and worked until recently. Whereas I, did not. But still, two months. It's amazing. And my dad can finally breathe a sigh of relief. That's a huge blessing. Anyway, I don't know what finally made me want to share, but there it is.
10 people like this
19 responses
• Philippines
5 Oct 10
I cried after reading your post. I feel your pain. I don't understand why God let things happen like that but as you said, that is called life and now I understand. I know you miss your mother, and if ever there is a miracle I hope that it will happen to you. I hope there is a chance to bring her out of her normal state again. MOreover, I think God has a better plan for you and your father and it seems it is about you and your father. NOw that you and him get closer, everything will be a lot of challenge but you both will get tougher to face it as you have each other. Is there a chance to bring back your mother to normal state? sorry I do not know anything about Alzheimers and I don't want that to happen to anyone as it is so painful to be in that kind of situation.
2 people like this
@AmbiePam (94073)
• United States
5 Oct 10
Thank you for your kind words. I really appreciate them. : ) There is no cure for this disease, it actually gets worse over time. However, there is always hope. 100 years ago no one ever thought there would be a cure for polio, but one day a cure was found. So I will never give up on a cure, but for now, there is not one.
• Philippines
16 Oct 10
You are still positive about it. I wish when the time comes that someone have the answer and remedy for that kind of disease, i hope your MOm will be the first person to be cured. It can happen. We have to be positive about it.
@cynthiann (18602)
• Jamaica
6 Oct 10
Sometimes there are things that have to be said and you have said it. I wish that I could give you a big hug my dear. I have 2 friends suffering from this awful illness and i is very hard on their families so I do understand what you are going through. People with this illness seem to get worse at night and this makes it hell for the caregiver. You and I both know why sin and disease is in this world and our Saviour told us to take up our cross and follow Him. It was not written on a tablet of stone that we would have life fair.No one ever promised that life would be fair.But what we were told is that we would have eternal life. Being a Christian is not easy and for your family life will change and not for the better. Your Dad needs as much support as he can get from family, friends and social services that may be available. Your mother may live for a long time. You need help and advice on coping methods. She is such a young woman. Thank you for sharing this with us, your friends and feel free to pm me anytime you need comfort or prayer or just want to rant. Many blessings to you and your family. You are an
2 people like this
• United States
5 Oct 10
That's alot on anyone's shoulders. I am glad you do what you can to help make things easier on your Father & comfort him when he needs it. I don't recall you saying if you have any siblings or not who could also help your Dad in dealing with her issues. I bet he'd appreciate you hanging out and just letting him take a well deserved nap on his days off of work. I know he is busy but have either of you looked into getting into a support group for caregivers to Alzheimers patients? It would be a nice setting for you two to perhaps share what you are going thru with someone who's in those same shoes. It could be beneficial for your well being. I understand some of what you are saying as I had to care for my mother to a degree but she had other issues (depression ect) than what you are going thru. If you need a shoulder you know how to find me. I applaud you for stepping up to help your parents!
@AmbiePam (94073)
• United States
5 Oct 10
Thank you. : ) I have a sister, and she and her husband live 3 hours away. She has told my dad she wouldn't mind my mom coming to stay with her for a week to give him a rest. She really didn't "get" it, until earlier this year when my dad went away to a conference. She came up to stay with my mom, to help her get her house organized (my sister is a clean freak, which is good in my opinion). And I of coursed stayed at my apartment. After the first night, as soon as I got to my mom's house, my sister pulled me into a room, her eyes wide, and proceeded to tell me how horrible her night was with my mom. I listened to her thinking, welcome to our world! Since then, she has been pretty supportive. My mom is on anti-depressants, and I can tell a big difference in her depression lately. She was on them before the dementia reared its ugly head, but after her diagnosis, she got worst, crying fits and all. Now though, the depression seems to be under control. So does her fibromyalgia. I'm thankful. Thank you for the advice about the support groups. My dad won't go, but I would like to look into it for myself.
@katsmeow1213 (28716)
• United States
5 Oct 10
I'm sorry. I don't know what that must be like, I've never personally known anyone affected by this. I've only seen it on TV and stuff, which probably isn't even anything like real life. Your poor dad.. I feel for him, I really do. That's a lot to put up with, but he's hanging in there like a good husband. You need to tell him how proud of him you are! Some men these days would just as soon ship her off to an institution to deal with. He's a good guy, and you're a good daughter for doing your best to keep your cool and remembering she can't help it. I know you know this.. but you can't take any of it personally. The real mom you know and love still loves you!
1 person likes this
@AmbiePam (94073)
• United States
5 Oct 10
With my dad, it just hurts me to know his life is not going to get better. They just celebrated their 35th wedding anniversary, and it was not a celebration in truth. She is oblvious to the toll it takes on him. She doesn't know how hard it is on us. And I guess the goal is to make the person with the disease as comfortable as possible. It's just knowing that my mom turned 51 a couple of months ago, my dad just turned 55, and there are no more good years ahead (barring a cure, which I do keep hope alive for). And that is just the truth. He can have good times with family and friends, but they won't be with my mom. It's hard to explain the dynamic now. They were partners. But you can't really be partners when one person isn't capable of so much. However, I'm telling you how I perceive it. I think him being one of 16 kids, and growing up so poor, instilled something in him that I won't ever fully understand. There would never be a point where he thought of leaving her, or putting her into a home. He'll take care of her until he physically cannot move (Which I'm not saying is good, that's just him). That man is amazing. He may not have been overly affectionate as a father, and very stubborn as a husband, but one can never find fault with his devotion. When he said the vows for better or for worse, he meant them. But I don't think anyone ever thinks the "for worse" will come this soon.
• United States
6 Oct 10
It is very sad. I'm really sorry you and your dad have to go through this.. and it will be a very long battle as 51 is still very young. It must be so awful.
@paula27661 (15811)
• Australia
7 Oct 10
First of all I would like to say how sorry I am that this has happened to your mother. Life can deal us very tough cards sometimes…I’m really glad you shared this with us because I found that whenever I have done the same and opened up about a problem it has felt like a small relief. I appreciate how heartbreaking this must be for you and I promise to include you and your mum in my prayers from now on. I guess the only thing to do is take life one day at a time with the trust that you will survive the bad days and savour the good times. Take care...
1 person likes this
@cyrus123 (6363)
• United States
5 Oct 10
I am so sorry that you are having to go through this! She is awfully young to have this disease. However, I have heard of people in their 40s being diagnosed with it but I think it's kind of rare. My mother had alzheimer's but she was in her 80s when she was diagnosed with it. Believe me. I know what you're going through because I've been there. It's really rough! She would get disoriented a lot. She would say she wanted to go home when she was already at home. My oldest sister and I would take her for rides so she would think she was going home. However, we would just come back to the same house. Also, like your mother, she would get up and get dressed in the middle of the night, thinking she was going home or wherever. She would also say that people were stealing things from her and she would have hallcinations about other people being in the house. I can't begin to think of all the things my family and I went through with her. Before she was actually diagnosed with alzheimer's, she got to where she would get lost while driving. My brother suggested she quit driving as a result. I'm just glad your mother was able to get on disability as fast as she did! My mother was already getting a social security check when she was diagnosed with alzheimer's. I get an SSI check once a month and it took me a long time to get it. I'll be required to file for social security again when I get 62, which will be in 4 years and I hope I get it then. I'm just so thankful that I was living with mother the last few years of her life. I'm also thankful that she never did get violent and lash out like your mother sometimes does. Please know I will be praying for you.
1 person likes this
@AmbiePam (94073)
• United States
5 Oct 10
Thank you so much! My mom lately has been hallucinating that the phone is ringing. She'll run into the room to tell my dad the phone is for him, but the phone isn't even in her room.
1 person likes this
@nannacroc (4049)
5 Oct 10
Alzeimers is such a cruel illness,even crueller in your mothers case as she is so young, my mother-in-law suffered with it. It takes away the person and leaves the shell. I'm glad you and your father have become close, you will need each others support. I don't have a religion but, sometimes I know faith can make people stronger and more able to cope. Take care and remember to look after yourself and your father.
1 person likes this
• United States
5 Oct 10
My favorite Bible Verses when Bad Things happen to Good People is Job chapters 1&2. It is a discussion between Satan and God, and God brags about his servant Job. I always wonder when bad things happen to us if God isn't bragging about us to Satan. We have a couple in our church that he has been diagnosed with the Alzheimers and she finally had to admit him to a nursing home because she could not turn her back on him for a second. It is very hard. I hope you get the support you need and so thankful this has brought you and your father together. God bless.
1 person likes this
@GardenGerty (160998)
• United States
5 Oct 10
Sweets, we never know what road the Lord is going to let us travel, but it is always interesting and full of lessons, as well as many joys and sorrows. It does sound as if she has been going downhill awhile as it sounds as if she has reached the mid stage of the progression of the disease. When my husband was in nursing school he had a unit on Alzheimer dementia. You will want to read a book by Naomi Feil about validation as a method of interacting with someone with Alzheimer's. Another very touching book is Losing the Words. Your relationship with your mom was good, and now it is sounding like you are moving into a really close relationship with your dad. She has been your caregiver, and you are becoming a caregiver for her. Awesome responsibility and gift. Read a variety of books on the subject, but in particular pay good attention to the book or books by Ms. Feil. I cannot remember the name.
1 person likes this
@chiyosan (30183)
• Philippines
5 Oct 10
I actually did not mind reading the lost post you had here. I have learned from it and yes it would be too easy for me to say to just be more patient with your mom and all. You said too that it really was not her anymore and this is what the disease did to her. I hope though that at some point she would get better - probably just stop doing things that only adds work to both you and your father, i don't know. It would take a lot more of time but you say this is what life is all about - we do not know what gets to be thrown at us. we'll just see things happening faster than we thought we can have. My prayers are with you and your family. Just hang in there.
1 person likes this
@Shaun72 (15959)
• Palatka, Florida
5 Oct 10
That is a lot to go through I am very sorry that this happened to your mother. I am a christian myself raised with christain parents. Life can be really hetic sometimes. I will keep you and your family in my prayers.
1 person likes this
@ElicBxn (63643)
• United States
6 Oct 10
If she becomes too difficult to live with, there are places for Alzheimer's victims. My mom has a friend who's husband had it, but was still mobile. I caught him once leaving the building because they were expecting guests. I don't know what would've happened if I hadn't been coming in just then. I convinced him to wait in the lobby. He only returned to the health care center when he was unable to walk any more, since they aren't set up to keep track of a person as able has he was. I KNOW this is the last thing you or your dad would want to do, but there may come a point where he has to make that choice, for himself as well as for her safety.
1 person likes this
@Mirita (2668)
• United States
5 Oct 10
Wow, I had no idea that a person could get this disease at such a young age. Well, just enjoy your mom as much as you can ,and try to do the best you can for her. As long as the family stays together offering support to one another is what really counts. May the lord give you courage at this difficult time.
1 person likes this
@carmelanirel (20942)
• United States
5 Oct 10
Okay Ambie, not many posts here bring tears to my eyes, but this one did. I want you to know I am proud of you and your strong faith, it's at times like this we draw even closer to our Father in heaven and in your case to the one here on earth too. I am glad they finally are receiving the disability, yet is it enough? If I remember correctly your father is a pastor? Is the church helping in any way? I will continue to pray, for when I lost my mother, it is instant, I don't know what it is like, (other than my grandmother who I wasn't close to) to loss someone to Alzeimer's, but you are strong and you have friends here who will stick by you, listen to you, and pray for you.. G♥d Bless you Ambie..:)
@CatsandDogs (13963)
• United States
6 Oct 10
Oh my gosh AmbiePam..... you and your dad have a long long road in front of you. As you probably already know, Alzheimer's is a mean cruel disease. It robs the person of their mind that they eventually don't recognize anybody that they once knew so well. I mean, for a person to have Alzheimer's, they feel like they don't belong where they are once they lose that recognition. As for God, He's not the cause of it. The devil is. We're not suppose to question God's work even though we do. But I think God understands why we question things like this happening. We're just not suppose to understand. At least not until our time comes when we go to meet Him. I just had another thought, maybe it's God's way of testing you and your father to see if your faith will hold up? What ever the reason, God is behind it doing what He knows is best. Don't let anybody pull you down and question your faith. Stand tall but be as kind as you can and tell these people that it's not God's doing and even if it was God's doing, He has a reason that we aren't suppose to know but in any case, you're going to keep on loving and supporting your mother till her final days and that's that.
@AmbiePam (94073)
• United States
6 Oct 10
She actually has something called frontal lobe Alzheimer's, which affects things like short term memory, concentration, and things like that. The doctors say she is likely to know who people are, but her memory of places or events surrounding them will be sketchy. So she shouldn't have trouble remembering who people are for some time, which I guess is a good thing. It's just something so different than what I think about when I think about this disease. I think of people not knowing their family, rather than not knowing how to dress themselves when they are able bodied. It seems unbelievable to me for my mother to look at me and ask my how to put her shoes on. Or for her to actually stalk my dad in their house. She even stands outside the bathroom when he is inside it. Then she'll stand behind him when he's on the computer. I don't know how he does it.
1 person likes this
@CatsandDogs (13963)
• United States
6 Oct 10
He's been born of saint qualities sweetie. Not to mention, he loves your mom but even still, it has to get on his nerves from time to time but he has the patience of a saint to put up with it.
1 person likes this
@piya84 (2580)
• India
16 Oct 10
I really dont know what to say after reading your post completely.She has got that disease early.I dont know anyone who has got memory loss at the age of 51. One thing is good Pam you and your dad are very much kind and understanding people.Your mom is lucky to have such a people around her when she is going through this. I really appreciate you and you dad's patience and understanding.
• Pamplona, Spain
16 Oct 10
Hiya Pam, Once I had a neighbour who was full of vitality and zest for life and in less than three months she just went from that to acting well not acting she was just someone who stood up, sat down, eat like all of us but her mind was completely gone a complete blank. She just lost her ability practically overnight. No one could have foreseen anything because it was so quick. One minute she was vital and full of life and the next minute she was only able to sit in a chair and stare into space. I was quite shocked I thought this kind of thing took ages to develop. However she was still able to hug everyone but not recognize anyone at all. I believe there is far more to this Alzheimer thing than it seems. I never saw her more than once after that and it was one of her numerous trips to the Doctor. Surely there must be some kind of way to diagnose this when we are small and therefore stop it from progressing so quickly or eradicate it all together. They might even find a way to stop future babies from getting this awful sickness. Here they have just stopped a Baby from getting a really bad illness. More time should be spent in getting this kind of illness sorted out. I´m so sorry to hear about your Mom too I can only send her a lot of hugs and to you too. This neighbour made me sat up and think it really did.
• United States
5 Oct 10
My thoughts are prayers are with you. I am sorry that your mom is going through this. I am glad that you live close enough to help out. I am glad that you and your dad are getting close also. Family is very important. At least your mom has disability that should help a little. I know money is tight for everyone.
1 person likes this
@kristeena (358)
• Philippines
5 Oct 10
According to one article that I've read,only about 2-5% women at an early age got affected with Alzheimer's disease because it is prevalent among those who are at the late 60's or 70's. Keep away everything that she might cause herself harm and the other companions at home. As much as possible, wear her a tag or band which says "memory loss" and include your contact numbers. I know it is very hard for you and your dad seeing your mom, the very best friend of yours having a condition like that. She needs now your full attention and care. It would be very stressful for you and your dad taking care of her. Never give up on her, if you feel like giving up, pause for a while and remember those early years of her life and combat your feelings with prayers. For sure, God will make a way...
@AmbiePam (94073)
• United States
5 Oct 10
She doesn't wander off. She knows who she is, who everyone is, and her address and phone number. Unless one lives with her, one really doesn't notice anything too off. And she is always either in the company of either me or my dad.
• Philippines
5 Oct 10
It's good to know that she still remembers everyone and she doesn't wander. Your teamwork with your dad is great. You have a long way to go. Just keep the faith and love.
1 person likes this