I'm new here...needing to vent - Alzheimer's Disease & Dementia Message Board

grammyjannie · 05-19-2008, 10:43 AM

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!

Martha H · 05-19-2008, 01:58 PM

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

grammyjannie · 05-19-2008, 02:30 PM

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

Gabriel · 05-19-2008, 03:18 PM

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

skimps46 · 05-19-2008, 03:39 PM

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