Hello all. I'm obviously new to this board, so I thought I'd give you the background before I post my "help!" question, probably in another forum room.

I'm the 45yo son, only child, of two aging parents. My father, 87, has had alzheimer's for several years now. My mother, 82 (tomorrow), had been his primary caregiver until around last Thanksgiving. They live(d) together in a small rambler, about 10 minutes away from my own home.

Now that the roller coaster has pulled up to the station, let's get on for the ride, shall we?

Just before Thanksgiving, my mom complained of some issues relating to constipation and generally not feeling well. She's very poor at describing her own symptoms, and typically minimizes everything. Well, she did exactly that, since my wife and I were leaving town for a few days - she didn't want to onconvenience us. On our return, we were to have my parents over for dinner for their 55th wedding anniversary. My mom called in the morning to say that she wasn't feeling well enough to come. That was big, so we went and visited her, and sure enough, she was very, very sick.

Over the course of the next three weeks, there were many doctor's visits and tests - x-rays, cat scans, ultrasound, endoscopy, one overnight hospital stay - and aside from showing more arthritis in her back than we expected, she was actually very healthy, except for being sick.

During this time we arranged with an agency such that they, and I, provided 24 hour care at home for my mom and dad. Mostly it was about taking care of my dad, which amounted to preparing meals, doing wash, and "keeping an eye on", and trying to make my mom as comfortable as possible.

Also during this time it was obvious that being my dad's primary caregiver for so long was at least an issue, if not a significant contributing factor to my mom's illness. I was able to place my father in a very good assisted living facility about 25 minutes away. It has an Alzheimer's unit, which he is not yet in - he's in their standard assisted living area for now. He was "uncharacteristicly philosophical" about it ... the leverage we had, of course, was that it wasn't about him, but rather about my mom's health. We talked several times in the days leading up to his move, and while he definitely didn't like the idea of leaving home and wife, he basically allowed that he would do whatever it was that I thought was best. I put a fair amount of effort into preparing him (an a level appropriate to his dimentia, of course), and simply allowing him to "vent" at times. It seems to have paid off. He's been there for two months now, and while he definitely has his moments (i.e. "I hate this house" - refering to the AL facility, repeated wishes that he could go home, missing his wife, and so on), he has accepted and adjusted much better than any of us had imagined he would.

After my father was out of the house, we were able to safely cut back on the 24hour care, and my mom continued a fairly slow, but steady improvement. Still not really sure what from, but progress was definitely being made.

Until her bowel ruptured.

I recieved a call from a friend of my mom's who had attempted to talk to her on the phone one Saturday morning, and there was clearly something wrong. We got over to my mom's home quickly and found her in a LOT of pain. A few minutes of assesment, and it was ambulance time to the hospital. Pain meds had little effect, so early Sunday morning the decision was made to do emergency, exploratory surgery. The result: perforated bowel was discovered, a bowel resection was performed and colostomy created. I was quoted a 25% mortality rate - typically due to infection from the contents of the bowels floating around in the abdomen in places not intended.

The next two weeks were really hard for everyone as my mother suffered through the pain and post surgical recovery. Turns out she's a wailer and moaner, something I never would have guessed. She also loved to pull out I/V's, nasal tubes, what have you. She also managed to climb out of bed at least once (over the rails, thank you), and certainly tried repeatedly. There's not much to compare sitting next to your mom's bed in ICU while she's writhing and moaning somewhere between pain and halucinations. Then later that week being asked how my grandmother was doing (passed awas 23 years ago) and then my grandfather (ditto, 35 years).

She was discharged to a skilled nursing facility. I won't get into the massive ball of confusion leading up to the discharge only to say that when facilities who are used to hearing "medicare" they sometimes have a really REALLY hard time hearing "private pay". Our choice of facilities was one of last minute frustration. It was "adequate". Clean, but not as attentive as I would have wanted. She was there 5 (unhappy, but uneventful) days.

During that time I once again arranged for 24 hour care at home. (Thankfully something we can afford). This time slightly more skilled personel, and this time without me in the schedule. We also made more use of a private caregiver who had been helping us before all this began - she used to sit with my dad one afternoon a week so my mom could get out of the house. A good relationship with all. She, plus agency CNAs, were in the house 24 hours a day.

My mom was VERY happy to be home, as once can imagine. Major major boost in morale of all involved.

Her progress has been fairly steady until recently. She accepted the colostomy well, and we've all been learning to clean, change, and manage that. In fact, I characterized her recovery as simply being all about strength & stamina, and not much more. We had every expectation that in time she would return to her fully independant life. In fact, we were begining to ramp down on the 24 hour care (after installing a medic alert type monitored panic button).

Then earlier this week, she fell.

Fortunately our caregiver was there at the time to pick her up. No broken bones, only, apparently, a bleeding cut. However the next morning she discovered she couldn't see out of one eye. A doctor's appointment diagnosed a serious problem and surgery was performed. In the fall she'd torn the incision from a prior cataract surgery. They've attempted a repair, which was evidently difficult, and we've been visiting the doctor daily. The prognosis for restored vision in that eye is currently guarded - more surgery might be required to seal the tear, and they haven't even looked at the retina yet due to blood in the eyeball.

So there we are. I've left out a few of the bumps in the ride - such as her dog getting exceptionally ill (my mother is VERY attached to her dog, and it's an important part of her comfort at home). Dog has recovered, but not without a lot of stress and anxiety on everyone's part. Or such as their alien registration cards expiring and what was to be an in-person trip to the INS needing to be re-arranged & re-coordinated into a site visit by an INS officer. No problems there, really, other than just another level of responsiblity.

Me? I'm just quietly going nuts. My wife has been exceptionally supportive throughout all this (we have no kids), but she can't be "the" son. It's hard to describe, but there's a level of responsibility that, as the only child, only I can bear. It's a heavy load. I find I'm good in a crisis, but this crisis has been going on for three months now, and I'm not sure how to keep holding on / holding up. I did manage to leave town for a couple of days alone in our RV on the beach. It was good, but the return was depressing, and was followed by the fall & eye problem. Yep, I'm afraid to answer the phone these days.

In the good news catagory, I do have POA for both, and am handling finances & other administrivia without much of a problem. Heck, even did their taxes for the first time without a hitch. (Haven't done mine, but that's another story.) I'm also semi-retired and don't have the conflict of a job competing for my time.

The problem with this roller coaster is that I can't see what the next hill looks like, how big it is, or when this damned ride ends.

I do have questions for your comment ... not sure I'll get to them tonight, though. I've seen a lot of very thoughtfull and helpfull advice here, so I'm looking forward to what folks have to say when I do.

But for now, you've got the background story at least.

Leo

Leo

Welcome to the forum. Somehow I overlooked your post, I'm sorry. I'm glad tyou found us. We all try to help one another.

That was a very informative first post. How are things in your life now? How is your Mom feeling? Post again so we can get to know you and perhaps offer some advise.

Vicki

Sugarlips

Leonot, This roller coaster rideyou are on may be a short one.When so many events occur at once it does become over whelming.Many times we have t step back , take a deep breath and try to get a better perspective.It is not easy to make decisions while under stress.Before making any decisions have all the alternatives in front of you.If you are able to afford in home help try that first.Mom has been dealt a massive blow physically.To have another may be too much and she will loose the will to heal.So much is mind over matter.It is difficult to turn over the reins of your home and life to another.After all you do it for all the past years with great success.We all need to put ourseves in their shoes.How would we like to hear that we are no longer able to do all the things we consider to be apart of who we are.We as parents climbed those very mountains and survived.They held up under the most difficult circumstance and now they see all that slowly but surely falling by the way side.Not easy for ay person no matter the age or circumstances.Many times we have to try to relate to what is happening to them as individuals.Never make a decision under stress.It is too spontaneous and something gets lost .This wil affect you and your loving wife.But , wth the finances available I do think you can come to a solution all can be happy.I stand by what I said about having a 3rd party intervene.A person she feels has her best interest at heart.Please keep us informed.Just remember we always have space on the roller coaster.

Leonot, This roller coaster rideyou are on may be a short one.When so many events occur at once it does become over whelming.Many times we have t step back , take a deep breat and try to get a better perspective.It is not easy to make decisions while under stress.Before making any decisions have all the alternatives in front of you.If you are able to afford in home help try that first.Mom has been dealt a massive blow physically.To have another may be too much and she will loosethe will to heal.It is difficult to turn over the reins of your home and life to another.After all you do it for all the past years with great success.We all need to put ourseves in their shoes.How would we like to hear that we are no longer able to do all the things we consider to be apart of who we are.We as parents climbed those very mountains and survived.They held up under the most difficult circumstance and now they see all that slowly but surely falling by the way side.Not easy for ay person no matter the age or circumstances.Mant time we have to try to relate to whatt is happening to them as individuals.Never make a decision under stress.It is too spontaneous and something gets lost .This wil affect you and your loving wife.But , wth the finances available I do think you can come to a solution all can be happy.I stand by what I said about having a 3rd party intervene.A person she feels has her best interest at heart.Please keep us informed.Just remember we always have space on the roller coaster.

Good morning, Leonot (and wife). Welcome to the forum. Come on in and enjoy a cup of coffee with the rest of us.

I am SO sorry to hear about all the serious illnesses with your Mom. If she's always been the "strong & silent" type, it must have been incredibly strange - for lack of a better word - to have seen her actions in the hospital!

Caregiving does take it's toll. As you continue down the CG'ing road with your parents, please remember to spend plenty of quality time with your wife. It's fantastic that she is supportive, but everyone has their own personal limit.

Fear of the unknown can sometimes cause an underlying anxiety/stress reaction where you may begin to be "short-tempered" around one another. No advice -- just "be aware" of it.

Again, welcome. There are wonderful people on this board.

~ Janie ~

I wanted to take a few mins to say "Welcome to the forum" and hitch your roller coaster cart to ours. At least you do not have to take the roller coaster ride alone.

Edyth Ann aka Bubblehead aka Queen Bubble
AOL IM EdythAnn12
edythann@netzero.net

Leonot, welcome to the forum.You certainly have been on a roller coaster ride.When we are faced with so many unexpected events we do have a tendency to fear what will happen next.We climb one mountain , reach the top and have another to climb.Times like this really do challenge a person.My husband has a colostomy so I am aware of what it takes to care for one.Not always so easy.It is good that you have a supportive wife.That is so important.Also the fact that you knew you had to distance your self and do some serious thinking.Your mom does have health issues and difficult ones.You will do better to deal with the issues at hand.She sounds like a very determined lady and that is in her favor.The trauma she suffered will cause her to be incoherent.Because of her age her recovery may be slow .I am sure the fact that she has you by her side as well as your wife has been instrumental in her fight to get better.We all have the fear of the unknown.We have all asked ourselves can I do what needs to be done for the loved one and still maintain my well being.This is what all caregivers ask.The truth is we never know until we give it our best.If you discover you are unable to do the caring then you will make the decision that is right for all. The more help you are able to get the easier it is.You will discover, with much effort, what is right for all of you.It is not an easy decision to make.We hope you will continue to share your moms progress with us.You will find so many here that will help you in any way they can.This forum is so fortunate to have a fast array of experience.Thank you for sharing your experience.Each person brings something of interest to the forum.We live ad learn through one another.