Aging Parents Anonymous

DorK, Your parents are waaaay too young to be going through that. It really breaks my heart. I am so glad you spent some very special time with them recently, and hope you get to go back soon, or they can come up to see you. Would probably be a very hard trip for them, though.

Hope you girls are doing okay. Dealing with parents that are declining is just so hard. I will be posting more with you I am sure, after my parents return here on the 29th. I am thankful to still have them, and that they can make that long trip from HI to AL. And I know I am lucky to still have them with me, but it still hurts to see my mom declining. It is to be expected at 91, and my dad is almost 95, but still hard. She is so much happier here, so I am glad they are able to return. And since they have their own place here, she is surrounded by things she loves. Plus the nice view of the lake! My mom's 91st was a few days ago, and usually we have spent her birthday together, since mine is also coming up. So I was sad not to be with her on that day.The past 2 years on our birthdays we were in Australia, visiting relatives. On her 80th, we both went parasailing, and I had hoped to do something wild on her 90th, but all I could think of in OZ was to climb the Sydney Harbor Bridge. BUT that would have been too exhausting, and even I prolly could not have made it! But it was still special, spending that day with her. Today we are going to a funeral for my DH's former mother-in-law, who was such a dear sweet lady, and was 95, but had alzheimers. She adored my husband, but in her later years could not remember anyone. I know my stepdau will be sad, as that was her grandma, and her other grandparents are long gone.

Hugs to you all,

Kathy

Oh Joy, How sweet of you to get your mom back on Facebook, even if her happiness is fleeting. Its connecting with family, the past, and things that your mom loves. You are on the right track, by focusing on things that your mom enjoys. My parents will be here on Wednesday, for at least 2 months I think (one-way tix this time). My dad has mentioned how my mom has some good days and some days where she can't remember anything. LIke when the dr asked her this week, at her appt, which pills she was taking (she has a ton) and she didn't even remember that she takes any. When I sent her the bound booklet I compiled of 30 of her paintings she has done over the years, she was so tickled. Every year she says I give her the best present she has ever gotten, and she did say that again! I just wish I could have gotten pics of more of her paintings, as years ago when she painted for gifts, we never took pictures of them. But this is something she can look at, that will bring her pleasure. I had given her a digital photo frame and loaded it with pics I had, but she doesn't know how to use it, so it just sits in a drawer I think (or she may have given it away...lol). Anyway, when they arrive, I will prolly be on this thread more, as I will be facing what she is going through, every day. And you girls are so supportive!!!!

Joy, Where in OZ do you live? I may have asked you before, but can't remember. Are you following chrissyb's journey across the US? She lives not too far from Adelaide (I think) and started almost a month ago, visiting bc.org friends all across the US. She is posting a journal here at bc.org and it is so neat to hear of her adventures and all the wonderful gals she is getting to meet! And she is an inspiration to everyone she has met!

Hoping you gals are doing well, and able to cope with aging parents. I know we are lucky to still have them, and glad we can share ideas, vent here, etc. Have a good day!!!!

Hugssssss,

Kathy

My name is susan, and I am 52 years old. My husband is 56 and has early onset Alzheimers. My MIL and her brothers also have Alzheimers, but I am not involved in their care at all. They live a long way away. My MIL's care is managed by my brother-n-law. The brothers, I have no idea. The family separated long before I knew them.

Only recently has my husband's fate caused issues. But his pattern is following his grandmothers and it is full of anger. Anger at the world. Anger at his brain. And, anger at me. Especially when I have my treatments. He wants me to accomodate his new reality, and yet he doesn't want to work out the details.

My great fear is that as my mets march forward and consume my body, his Alzheimers will require more and more daily care. There will be no money for long-term care. There will just be my ability to earn a living and care for him. Just writing this down for the first time is scary. But I see this huge train coming, and there is no way to get out of the way.

He has no intention of living longer than me. His mother and grandmother's experience is simply not an option for him.

I don't think there is anything anyone can say that will give me insight.... but I am frozen with fear. I hate this anger. I hate being yelled at. 

Oh Susan, my heart goes out to you. He is so young to be going through that, but it seems to be hitting people young as he, which just is heartbreaking. This is a good place to vent your feelings and try not to hold them all inside. I am hoping you had many wonderful years together that maybe you can draw on when he gets angry at you, and try to remember that he has no control over his actions. As you said, we probably can't say anything that can give you insight, but maybe we can provide a little comfort by being here for you. I don't know if there are any services that can be of help to you, but I imagine you have already checked that out. You can only do so much. Please don't forget to take care of yourself too, as you are going through so much too. I was widowed at 41, and at the time I had wished my husband was still alive, even if he was in a vegetative state, I thought that would be better than having him totally gone. But  hearing some of what you are going through and how devastating it is for both of you, I realize that coping with something like that is so very hard to do. It is one thing for those of us dealing with our parents dementia, but then to have to deal with your husbands alzheimers at such an early age, is just not something you would expect to have to deal with.  I know I am rambling, and hope I am making even a smidgen of sense. I am just trying to convey that I can only imagine how hard this is for you, I wish there was some way you could get some help, and will keep you in my prayers. (((Hugs)))

Joy, It does sound like the hostel is agreeing with your mom. Glad she has settled into that one, but too bad it is such a long drive for you. NIce though that you can visit weekly! Funny how she sometimes hides her pills....I wonder why a lot of older people like to do that...sorta like when we were kids and would try to do that!  I don't know where my parents would want to be, if they end up needing that level of care, someday. I am wondering how my dad is able to do so much and help my mom too, since he is almost 95. I also am worried there will be even more decline in my mom's memory since I last saw her a little over a month ago. I have relatives in Sydney that we just found (well they found us) a little over 2 yrs ago. And so far we have visited them twice! We also visited the Blue Mountains and stayed there a couple of days (beautiful, and SO many gorgeous birds)! We stayed in Adelaide, Melbourne (2x),and Brisbane. Your country is so huge, that I have just touched a small part of it! A few years ago my Dad had a long trip there, and also went to the Great Barrier Reef, Ayers Rock, etc. HE did not know he had a first cousin there at the time!

Hope you gals are coping okay. Cheers for all you do for your loved ones!

Kathy

Glad you joined us here Susan, as it really DOES help to vent. Yes, my late DH was really my soulmate and I still miss him every day, even though it has been 19 yrs. I have remarried, and he is a good husband, but my girls and I still think of my late DH, their daddy (he adopted them when we married and they were very young). I have never dealt with anyone with a long, lingering illness, so cannot even imagine that. Glad you have a lot of memories to draw on, as it sound like you are needing to do that a lot. Esp with his intelligence, I guess it is just so overwhelming for him. Hope he will not take it out on you for very long. My husband is a few years older than I am, so I guess someday I probably will be caring for him. You are a dear, and try not to let his mean streaks get you down. Just remember how STRONG you are, and you need your strength and sanity to battle your illness, too.
Take care girls! I have to runto the dr and get bloodwork done.

Kathy

Hi Althea, You started this thread, but I hadn't seen you post for awhile, so it was nice hearing from you! And what wise words to Susan; I also hope that she can find some help. I am glad your mom is now accustomed to receiving help from you, and hope the next transition will go well. I have lots to learn about all of this, and really am taking in everything you all say here about caretaking and aging parents. Thanks for starting this thread!

kathy

My parents are here now, in their own home nearby, for at least a couple of months. Thank God my Dad (almost 95) does most of the cooking, as I just called my mom and she could not figure out how to turn off the stove. I thought she meant the oven so asked if there was an "Off" or a "Clear" button, and she said yes, but touched it and nothing happened. Then she said she was just trying to heat up a pan. OHHHHH (light bulb in my head) so I asked her if she had knobs for the burners, and she said yes, THEN she remembered she could turn the knob OFF. So glad she does not cook often. I am trying to get her to take her pills 2xday, but for some reason she doesn't have them all with her (although they spent $600 right b4 coming here on her meds), so I guess I need to call her dr in HI tomorrow.

Hope all you gals are doing well! Althea, I saw your comment on Chrissyb's journal thread about the Kings Ranch Chicken, so I searched....is that the Kings Ranch Chicken Casserole? I printed it out just in case that is the one you make! Sounds good.

Kathy

Victoria. I have prayed for positive news for your Dad. Your story was touching.....hugz to ya!

Victoria, Been thinking of you and your dad, and hoping things are looking more promising. It really hit home for  me, as I am just a yr older than him. I had posted to you right away, but notice it is not here, so not sure what happened to it (I prolly forgot to hit submit!). Just can't believe this happened to him at his young age, and only symptoms were a continuing cough. Let us know how he is doing, okay?

Hugs,

Kathy

Oh Anne, some (((Hugs))) for you. Glad you are able to visit with them every so often, and help out. I know the feeling of losing them slowly. My mom is so forgetful, that we do some awesome things, and the next day she doesn't always remember them. And the only conversations she remembers are the ones that REALLY stick in her mind, otherwise its like it never happened. She used to be a amazing artist, and now is trying to paint like she used to. Well, what she still can do is a million times better than I could do, but it frustrates her that she can't remember how to do certain things and is not enjoying doing it anymore. I go to paint with her when I can, just to get her to do it, otherwise she won't paint if I am not there painting with her. We just got home from dinner out, and I know no one there would have believed they are in their 90's, but its the everyday stuff and forgetting stuff, that shows their ages. I know what you mean about your Dad maybe not knowing you someday....I worry about that too. Must be so extremely heartbreaking when that happens. Glad your mom gets some relief when he is at the day care program. Hang in there, we're all here for you!

Kathy

I'm roasting at my parent's house...the thermostat is set at 80, but its 85!!!! and my Dad is cold!!! finally convinced him to put on an undershirt....he'd rather the house be put up to 90!!!  he just wears a long sleeve top and pants and thinks if he's cold my mother should put the heat up...  Its hot and humid here, but will wait a bit and go for a walk.....then at bed will open the window and turn the ceiling fan on and hope that helps.......

 My mother scared the day lights out of me driving from the airport...I was a bad "front" seat driver.....I really don't want her on the highways.....I thought she was going to let me take the shuttle to the airport Monday, but she said I could drive to the airport since she makes me nervous....thats good for me, but I worry about her driving home....she doesn't stay in one lane and goes anywhere froom 40 to 60 mph....and she tells me she knows what she is doing, but she gets a cramp in her thigh driving on the highway...so I told her don't drive on the highway and she said she can't avoid it (I think she was meaning to the airport)....I know she doesn't like to drive...but she won't give in and let me take the shuttle....I'm a nervous passenger anyways, but she scares me more than anyone else in the car.....I don't know who I worry about more, my Mom or my Dad.....Dad's memory is shot, but Mom is sooooo stressed...she has been taking care of Dad for almost 5 years and the past year has been very hard...she is worn out and just doesn't know what to do.....she talks about "placing" him.....but then she says that other than his memory he really isn't that bad, but the cold bit is so hard on her because I Dad argues with her about the heat!!!  I wish I lived closer to help out more......I would love to talk to my mom's counselor but I don't know how to ask my mom for permission to do so.....I think that would really hurt her.....so I'll just that topic alone....my Dad is also having some health issues....had a chest exray and they saw something so he needs a CT scan....also protein in his kidneys...mom said the doc says it kidney failure, but no specifics given and he's had this for several years......Dad says he won't do dialysis....potassium levels are always low and they keep upping his potassium pills...don't know the strength but doc has him on 10 one day and 20 the next....dad is also diabetic, anemic and who knows what else!!!!!  Getting old stinks when you aren't healthy......and I look at my mother and see my grandmother (her mother)...and I see my Mom as old.....don't think she is doing as well as she thinks she is......but I think its all stress related......

Thanks for letting hog the thread...this is the third post I've written in the past 24 hours....thanks for being here....

I took mom out to lunch when we had to run a couple errands...We had a nice time chatting, but then says, I don't want to talk about it anymore as it churns my stomach!!! Conversation was what she needs to do for her!!!!  She is so stressed...worried about the future...worries about things that are totally out of her control.....gets annoyed when dad sits down for lunch and asks her to get him a drink (he could have gotten it before he sat down), but then when we were going out just to get out this afternoon, she asks him if he needed anything!!!!!  She is so conflicted....Mom has always taken care of Dad...catered to him even when he was well and younger...Dad has never been one to do much...never cooked, grocery shopped or really did much in the house.....Now that he can't do as much Mom feels overwhelmed....I told Dad that he was lazy!!!  he sat down at breakfast and asked Mom to give him the paper...the paper was on the table....he just needed to stand up to reach it!!!!!  Geeze!!!!  But in the end, Mom really doesn't know what she wants, but yet she just wants dad to leave  her alone!!!  She is worn out...she just started a new anti-depressant and I hope it works better.....she moves so much slower than she used to....today she said its because of the sandles she has on....and she keeps saying that she doesn't feel old!!!!!  Well she is only 77 and in basically good shapte...but here frame of reference is all people her age and older...my folks live in a retirement community and everything they do is in their community!!! Mom goes to aerobics, but its with all senior citizens.....so her frame of reference is skewed.....this summer mom says she doesn't see herself as old and thinks she's 50....I told her thats great, but since I'm 55, she has to be older than 50!!! 

I asked mom again about driving home from the airpot and sure she didn't want me to take the shuttle and she said NO.....I don't know how to ask in a different way without hurting her feelings....there is no way I can take her car away!!!!  that would be the death of her.......I would love for her to have to take the driving test again, but she would probably pass!!!  I just think some of it is that she is so pre-occupied and distracted!!!!   A good friend of ours is a pcp and he says kids should not be the ones taking the keys away...that the doctor should...helps keep peace in the family.....Gosh....mom just came to ask me a  question and I completely lost my train of thought!!!!  Oh yeah....I told mom that I could help make phone calls from home (Denver)...no phone calls made today....I think she just freezes and avoids things.....just too much for her to deal with.....I can't go look at places when I'm in Denver, but I sure will make calls or emails....I think I'm going to try to find the article about the program her therapist runs to get her contact info....Wonder if I called is I could just express my concerns but not ask her to share any info for me....or ask how to get resources for mom....also thinking about calling her pcp with the same questions......I know with confidentiality they can't share with me, but I could share with them....Don't want to go behind mom's back, but not sure they are see it all.....how stressed mom is......its just poor coping skills.....Geeze....its so much easier to deal with someone else's problems than deal with my own!!!!!!

Got a nice bottle of wine for dinner......boneless chicken thighs, kasha, potatoes, salad and gren beans....for me this is a really easy dinner, but for mom its a production....and the kasha is pre-made and in the freezer...I brought my challah from home....

althea, I am so glad you started this thread, even though it breaks my heart to read it.

My mom is gone, as many of you know.  I still miss her terribly, and think every day about all the things I wish I'd done for her or talked with her about.  I was not nearly patient enough with her, or considerate enough; but I didn't realize that (or at least my mind wouldn't acknowledge it) until she lay dying in a hospital bed.  Let's just say we'd had some "difficulties".

She was my dad's sole care-giver for about 4 years.  He has late-stage Alzheimer's (I guess it would be considered late-stage), and lived at home until about 18 months ago.  Mom was not a strong person, physically or emotionally, so the burden of his care really pulled her down.  Her own health was complicated by some major problems that eventually would have killed her, if that fall she took last winter hadn't done so first.

Thank goodness we had all agreed (more or less) to move Dad into a skilled nursing facility before that happened.  He is in good hands -- the staff are patient, caring, and gentle with him.  I always feared he would begin to show the temper he'd always had; but the opposite has happened.  He has become an easy-going, agreeable person who will comply with anything the staff requests. He never gets angry anymore, at anyone.

Alzheimer's is such a bizarre disease.  Dad no longer recognizes anyone, but seems to "know" that certain people will be kind to him.  He cannot read, but enjoys looking at pictures of the outdoors, wildlife, nature.  He cannot eat solid or liquid food, because his swallowing reflex isn't reliable and he chokes sometimes; so he is given "pureed" and semi-solid foods -- but, hand him a chocolate milkshake and he downs it in a minute.  He no longer speaks more than a word or two -- generally just "yes" or "no", and then only when prompted; yet, when we told him Mom had died, he looked distraught and asked, "Where will she be buried?".  (That was one of the most difficult conversations I've ever had.)

My sister and I have exchanged words about the meaning of the phrase, "quality of life."  She gets all emotional because Dad does not recognize her or remember stories she tells him; and she complains to me that his quality of life "sucks" because of that.  It's as if her cutoff for acceptable QOL depends on whether the person is able to recognize family members.  I am pretty sure that lack of recognition bothers her a lot more than it bothers my dad.  He seems puzzled, but not upset.

I know Dad's QOL is not what it "should" be, but I don't know what anyone is supposed to do about that.  He is getting the very best care; he is visited by loving family and friends; he is warm and comfortable; he gets as much mental stimulation as his poor mind can tolerate; and the staff at the nursing home adore him.  He has a living will/healthcare directive that stipulates no heroic measures (etc. etc.)... but, unless we're into euthanasia, I see no alternative than to do the best we can.

It's very, very difficult; and I appreciate being able to share our stories here.

otter

you know i am restricted from driving for another 6 weeks and an elderly woman has been giving me rides to our rehearsals.. at nite she can't see.   it's so scary.. I do help her drive, but gosh darnit, she can't even see the cross streets.   I am going to make plans for the two of us for the next few weeks, but she adamently assures me that she wants to help me out and has no plans to stop driving.

This Alzheimer's stuff has been very much in the news around here lately. NPR did a week long series during Morning Edition that my husband and I listened to intently. He pretends that he listening to learn more for his Mom; I pretend that I am just listening. To me, the most interesting parts of this series are all the studies that are being done right here in Boston. I think it is time for him to be diagnosed and then participate in these studies. If not for him, then for our daughter.

Two weeks ago, my dear cousin Henry who was dx'ed with Early Onset and was gene positive, died. He actually didn't die of a medical side effect of Alzheimer's, but an emotional one. His heart had a problem, but going to the hospital for treatment was so terrifying for him, the decision was made to not treat. His two siblings, who didn't inherit the gene, and his children who don't know yet were just crushed. As you can imagine, there was a ton of discussion about this disease over the family meals.

As to quality of life, we all evaluate that through our own filter. My mother-in-law who is in an advanced stage of the disease [recognizes no one but is still a bit mobile] has a lovely quality of life. Her assisted living home is lovely, they feed her well, her other son and daughter in law visit regularly, and until recently, they took her to church every week. But it isn't a meaningful life at this point. She isn't aware of the impending birth of her first great-grandchildren. She is unable to do even the simplest personal hygiene. She experiences no joy even from the things that used to make her life full.

It is just hard when these medical issues take over our lives, and take over the people that we love the most.