Hello there,

I am new here and I am searching for a forum with a friendly ear and maybe a shoulder to cry on, to post my concerns about my mom and her declining memory...My mom has been diagnosed with Alzheimer's some time ago, she is 79. She is still living at home with my 82 year old dad......I think I just need to be able to spout off. I spend 2 days a week (this is an overnighter) at my moms, I do the shopping and stuff and then cook dinners and such for the week. I do not live close, that is why it is an overnighter.... anyway I hope I have found somewhere I can find support for my feelings. like today I cried most of the morning... I just got back last night from an overnighter at my moms...my computer time is limited as I am not always able to connect, but I sure would like to be a part of this forum....

Welcome Jagsmu,

I'm sorry that you had to find us under such sad circumstances. Rest assured that you are welcome here. We are a caring group who have all either gone through what you are going through or are going through it with you.

I lost my mother the first of Nov. last year to this horrid disease. I lost my daddy five weeks earlier to an abdominal anuerism, He also had vascualar dementia, so I have a good idea of what you are going through.

How is your Dad's health? Is he OK? Is his mental health ok? How far along do you think that your Mom is? Is she having alot of difficulties? Do you have family to share with?

Now an important question. Does someone have a durable POA and a medical POA? And is someone on the bank accounts? This needs to be done before both of your folks get too senile to take care of it..

Welcome to the group. You will find a knowledgeable group of people who will welcome you. We come from all circles and have seen it all. Bless you for taking care of your folks.

thank-you for replying...... yes all the legal stuff has been taken care of...My dad is a real trooper and is mental fine and pysically fine... there lies the problem.... If my mom was on her own she would gladly moved to a care home... but with the two of them there is no talking about seperating them... They do pretty good with the help I give. so far the only thing that affects my mom is her ability to cook large meals., and of course the short term memory loss.... soups and eggs and toast and such is her choice of cooking, I phone almost each day to check to see which meal they have choosen for dinner.... I tired meals on wheels but they didn't want to be tied down at a specific time each day to wait for the meals as they both love visiting the second hand stores,,,,,not like they need anything but they do enjoy the hunt...my siblings live farther away than I, and just don't seem to get it!!!!!!!!(whine,whine,whine) I am tired of telling them that they need to visit but they are busy with living their own lives..:( It is so fusterating... they are more than happy to put the brunt of it on my shoulders...oh gosh this is sounding very self pitying....just sometimes it seems like I can not do everything that I feel is expected of me...
during my visit was the first time my mom had trouble remembering her address. I had bought her a lotto ticket and suggested that she fill the back out, she started to and then had to ask what her address was and then finally gave the ticket to my dad to fill out..... I guess it bothered me more that I realized for when I thought about it this morning I got really upset realizing that it will only get worse.....

jagsmu...the love and caring you have for your parents is what led you here during your search for answers...welcome!!

Most here share in your frustration. Some have been much too long on this path that seems to have no end; some have just begun this journey...but each of us can and have benifitted by sharing stories, suggestions...and even occasional humor. Please know you will get valuable info and soft shoulders here!

I understand too well what you're saying about family and their lack of response to what should be so obvious. I'm one of 6 "kids"...my Mom is just starting her 10th year in an Alzheimer's facility...I'm her only visitor (even tho there are 3 brothers within 15 minutes of her, I drive an hour each way to see her.) It took a while for everyone to accept the Alzheimer's...now that it has gone on so long, it is fact...but in the beginning, the first to really notice and question were the sister-in-laws. There is no going back...we realize now that we lost Mom long ago.

Bless you and your Dad for taking care of your Mother...it is a long journey. Hope to see you here often.........Pam

Welcome to the forum Jags. This is the best place for those listening ears and caring shoulder.... and some wonderful advice. It has been my sanity in the last year.

I do know exactly what you are going through. My Dad has had vascular dementia for about 8-9 years and my Mom was his primary caregiver..... until she was diagnosed with ALZ. I do not live near them and I tell people my job is riding the roads. It is better now that Mom and Dad have moved into Assisted Living. It finally got to the point they had no choice. They needed full time care, Mom didn't want anybody in the house with them, and they could not stay alone with both suffering from their dementia.

You Dad does need help and your love for your parents shows in your need to help them. What you say about your siblings is understood. Some just don't get it or don't want to get it. If they don't show up then they don't have to accept the reality of what is going on. It is sad but it usually falls on one to do all the work. I can understand your feelings so well and it's not whining. It is your reality and it's frustrating.

Good for your Mom and Dad for taking care of all the legal matters. That can make dealing with their affairs so much easier. I also had my name put on Mom and Dad's checking account which expedites things even more.

Keep a good eye on your Dad. I was much in the same situation as you are with my parents living in their home of 54 years and refusing to leave each other. Now they just live in AL together..... which is another story.

I am truly sorry that you are having to deal with this horrible disease. You have found the right place to sound off because we all know exactly how you feel. So keep typing and know we are all in this together. I will keep you and your parents in my thoughts and prayers.

Love, deb

I am wondering if anyone else has only on parent with alzheimers and they are still living at home with their spouse......if you have been on this path could you tell me what to look for in my DAD (the healthy one) for stress, or tell tails that say it is becoming to much for him.....He is so great with my mom reanswering many questions hundreds of times, he has the patience of a tree, or perhaps he just turns the hearing aids off.....:D. as long as my dad stays healthy I can see no time that they will seperate....I want to make sure that my dad is pampered also, hence the cooking of big meals,cakes,cookies and all the things that he likes.... I have asked that they make all their doctor appointments when I am there so I can keep up with what is going on, I take my mom, but my dad likes to go by himselve if needed.... I am on talking terms with the doctors and they have my cell phone #to call me if something happens.....I had their house alarmed with ATD alarms systems and the montitoring system. I have been thinking about the medical alert call button that one can wear, has anybody tried this and does it work well without scaring the person wearing it. I know lots of questions, but I am so thankful to find this site....

Having been in that position just watch for depression and signs of stress. It sounds like your Dad is a saint. Mom was until ALZ got her. I also made appointments when somebody could be there and tried to do special things for Mom. As long as your Mom is sleeping at night and your Dad is getting adequate rest he may just need something to look forward to (your visits) and frequent phone calls. It might be helpful to get them some cleaning help once a week or some part time help so your Dad can get out on his own occassionally.

Having a good relationship with the physician and pharmacist is a must. Be sure your name is on all HIPPA forms and they know to contact you. For some reason it was the pharmacist (we used a local pharmacy) that gave me a wealth of information on several occassions. They would always drop hints for me if my parents were taking too much or not enough of something.

The ADT system is a good idea. Not only for those that might want to come in but in the case your Mom decides to wonder, especially at night. I thought about the medical alert buttons but Dad would never wear it or remember what it was for. Mom was stubborn and thought she could handle anything. It might be worth a try if your Dad is willing and he might be if you tell him it is for YOUR peace of mind :) I don't think it would be scary. I think it would be a comfort to know somebody was a button press away and that is the way you need to present it.

Keep asking question.......

Love, deb

well I have already have arranged for cleaning ladies to come every other week, and when the time comes will bump it up to every week....I also arranged for a gardner to come and do the cutting of the grass and trim the hedges and such, I looked around and found a young couple with good references and the guy does the work with or without my dad helping and the young lady (who just had a baby) spends the time with my mom while the landscaping is beening done..., they usually come twice a month... My mom always looks forward to seeing and spending time with the baby..... My kids are great, they live closer to their grandparents and will do anything for them, they also stop by and check on things and then reports back to me:D

I have noticed that when there is a lot of things going on, or a lot of people at their house that my mom gets flustered. I think that she may be trying to "cover up" the fact that she forgets things and then gets a little owlely.
they still have a lot of friends and my mom and dad have always had an open door policy,,,, if your in the neighborhood stop in.. Do people with alzheimers avoid large gatherings???? does it make the them feel pressured?

It sounds like you have a good handle on what needs to be done and how to help your Dad. You are way ahead of where I was long ago. I am sure you are thankful for your children and their care of their grandparens. You did good there. I am glad you have some eyes and ears close by. Kudo's on the couple coming over to help your Mom and Dad. You are lucky to have such good people that are willing to help in that way.

I would answer your question by saying, from my experience, YES! Dad is a little different, with his vascular dementia, but mom gets aggitated, annoyed, stressed out, or just plain ornery when there is too much going on. In the very early stages I think she realized she was having cognitive difficulties before any of us realized it and was determined to deny it and to deceive us. She convinced her doctor that she was suffering from depression and told us that all the questionable behavior that we noticed was either because Dad drove her crazy or it was something Dad did and not her. That was accepted because we had all accepted that Dad had dementia years earlier. She still does it to this day....

If I would go visit she would be on her best behavior. If I stayed more than a few days she would consistently ask me if I didn't think it was time to go home. I remember a weekend my sister and her family were there. Mom stayed on the couch the entire weekend telling them she didn't feel well. I arrived before they left. As soon as they all pulled out of the drive she ask if she could get up now. It was evident that she thought she needed to cook and entertain while they were there and she was not mentally capable of doing that. She used to be the best cook in town but her ability to cook was one of the first things that left her. I also noticed that later Mom would have her "melt downs" a day or two after a busy few days with family and friends. She would put up that front until she was exhausted and exasperated and no longer able to function. Yet she keeps up that "front" to this day. It is Dad that catches her wrath... but he doesn't remember much... so we didn't know it for a long time. Mom now complains that she needs to socialize yet when the opportunity presents itself she shuns away from whatever activity would give her what she says she wants. She wants it..... but it makes her feel so uncomfortable at the same time.... and then she gets frustrated.

It is best to keep things as routine as possible, keep the crowds small, and not point out her inabilities.... oh and don't put expectations on her to function as she always has cooking and cleaning and taking care of others, which Mom's always do.

I always say, expect the unexpected and trust your instincts..... you are probably right!

Love, deb

thank you Deb for your insights... I have passed it around to make sure that there is not a gang there at the house, If the kids stop by and there are already visitors they don't stay, I think they realized the stress it puts on their grandmother..They will just drop off the dinner they made or whatever ...My mom does not do the big cooking thing anymore, like yours it seems it was the first thing to go, I have made it clear to those that visit that a plate of goodies is always welcome as this is something my mom would have done in the day, she sees nothing abnormal in it. my mom also claimed to not feel well over christmas and on christmas day when we were getting together at my daughters she stayed home and layed on the couch, the day after christmas she was back to "Normal" for her...

My mom has an obsession with being ichy.... we have been to the doctor many times and although her skin is red sometimes there does not seem to be any thing wrong... I went and got her some lanicane(sp)cream and spray that she can use liberally and she does, but it seems to me that it has turned into a compulsion...is this something that maybe she thinks that she has control over, the appling of the cream and such, so it gives her a little bit of selfcontrol as everything else she feels like she is fast losing control over....I would guess that the feeling of foggyness in her mind that maybe this is something she can hold onto, maybe even look forward to, in the way of caring for herselve!

What I have found is that both of my parents have a very difficult time expressing what they want to express. Mom will tell me she is fine when I know she is not feeling well but other times she will say she doesn't feel well when it is obvious that she's ok. I'm don't feel well may mean I don't feel like dealing with the situation. Mom constantly complained of congestion but there is no sniffing or runny nose. Then one day it just stopped. Her latest was her obcession with her "horrible" cough. I could talk to her for 30 to 45 minutes on the phone and she would not cough but a couple of times. She swore she had coughed constantly for weeks. It's the sense of time, or lack of, that is the problem there.

Dad doesn't complain of itching but he scratches and picks all the time. We just hand him some lotion, he grumbles and rubs it in. Dad doesn't feel pain. Dad had his big toenail removed, crammed the bandaged toe into his hard shoes, and told me that his shoes didn't fit. He never complained of pain during the infection or healing. The only reason I figured out he had an abcessed tooth was that he pulled on his ear which was unsual for him. He never once said anything about it hurting, even after it was surgically extracted. He does get a little grumpy at these times but nothing major.

Your Mom may have dry skin, rough skin, over heated, or some other discomfort and calls it is itching. Benign creams, lotions, or sprays are not going to hurt anything. Then it will cease as quickly as it began. Just pay attention to anything out of the ordinary and check to be sure there is nothing lingering under the surface that might need attention.

Love, deb

You're right. They tend to focus on one thing and it becomes the point of light in their world for however long it lasts. My Mom was on a dusting bing for weeks. She dusted every surface that was visable, whether it needed it or not. And she was using a walker at the time.

Now, this got to be an issue when she decided that she needed to dust the stove when the burner was on. Luckily I was home when this happened. I was horrified and told Daddy that maybe it was time to consider getting a place for Mom. He had been sole care giver up to this point. Well that went over like a lead balloon. I am an only child and my father looked at me like he had no recognition of who I was... When I fussed at him for what had happened, his reply was it didn't happen too often. So you see what I had to deal with. I live in VA and Mom and Dad were in Minn. I was making trips home every 6-8 weeks to keep tabs and to make meals and do doctor visits.

What I found was that they were not eating well, both of them were starting to lose weight. The house was clean (and well dusted!:D), but their general health was starting to fail. Daddy admitted that they weren't eating right. They didn't want meals on wheels because of a) wrong time; b)not hot enough; c) doesn't taste like Mom's d) not enough;e)costs too much. I couldn't win. And in the mean time Mom was forgetting how to cook and Daddy didn't know how because they were of the generation where Mom did all of the cooking. I was getting frantic. Then my parents guardian angels decided to step in.

Mom had to have a partial hip replacement and needed to have therapy so she was placed in a locked down AZ unit for therapy. It was there that it was actually discovered how bad she was and how good dad had been at covering up for her. Mom never left the unit.

We moved Dad into the independant living area of the facility about 6 months later. But that's another story.

You need to watch your father because he is your Mom's enabler. Your father is the other half of the tag team as my hubby says. He is doing the smoking mirrors part of the act.He quietly does things for her that you don't even notice that keeps their day running smoothly. It's what keeps them as a unit. They have learned to compensate for each other so that they can make it through the day. They do because they have to. Your dad knows how bad your Mom is getting, but in the ways of their generation, they just don't talk about it.That's it.

This is where your battle will lie. It will soon come a time where you will need to consider either 24/7 in house help or perhaps AL for them both. I know that Deb has had good luck with AL for her parents. But you need to start thinking down that path sooner rather than later. Your father is probably facing exhaustion from caring for your Mom. He may need help but doesn't know how to ask.

Big crowds are difficult for AZ. folks. They can't handle the noise and the crowds and the commotion. It's hard enough on regular old folks, it's many times harder on compromized folks. For them it's like being attached by sounds and sights and smells. It's like riding the tea cups at Disney world, everything just goes round and round. Few and far between is better. They do best with a set structure and routine.

I ditto everything Ibake said. Mom did cover for Dad and used Dad to cover for herself. They found a way to exist (sometimes it was not pretty) because it was necessary for their daily existance. Yet there were things that could not be overlooked forever. The only difference between your situation and mine is that eventually the caregiver (my mom) developed ALZ.

The defining event that lead to in home care was when Mom accidentally gave Dad an overdose of Xanax. He had a new prescription for aggitation. (one pill twice a day with a prn at night if necessary) From the pill count it appeared she gave him about fifteen in less than three days. She didn't remember giving him but two and when she called she told me Dad had a stroke. We hired a lady to come in 5 days a week, one of us went home each weekend, and we had a niece that stayed with them one night a week. They were only alone, at most, three nights a week and couldn't handle that.

They also refused Meals on Wheels for all the stated reasons. It became evident that Mom was not cooking. If they ate it was take out fast food or cereal. They were not losing weight because one of Mom's obcessions was buying sweet snacks and candy. She has stashed it away like a pack rat in the strangest places and that is not good for a borderline diabetic. Most people put valuable in the back of their underware drawer..... Mom had Dove chocolate truffels there!

Driving was the defining moment that lead to AL. Both Mom and Dad refused to leave home and refused to be separated. They leaned on each other (in their own ways) to get through the day. Dad was totally dependent on Mom and Mom used Dad as her cover and scape goat. We had figured out that Mom was taking her frustrations out on Dad. Mom's last visit to the Memory Assessment Center September 2007 was when they told her not to drive. Dad's driving had been taken away years before but we found out Mom was still letting him drive occassionally. Mom held it together until I came back home and she "flipped out". She decided she didn't want the sitter there and made it impossible for her to stay, including hitting her on two occassions which was very out of character for Mom. Dad was furious because that was no way to treat a guest in the house. Mom was angry with all of us. If we would just go away she would be ok. It was all Dad's fault because he was driving her crazy. Mom ended up crying hysterically for days. At that point we had no choice..... they were in AL within 10 days.

There is so much that goes on when you are not there. It is good that you have your children's, friend's, and neighbor's eyes and ears there when you are not, but it is amazing how well a loving couple can hide from everybody. They will not snitch on each other but will compensate for each other. Believe the unbelievable. When we moved my parents out we found all the candy stashes and burned pots hidden in the cabinets while many pots were just missing. Her file drawers were filled with random clipping of memory enhancement drugs but important documents were missing. We found many of those pills untake in the cabinet and unpaid bills for them. We found buried all the evidence of what was really going on.

I was not a fan of AL. I wanted to keep Mom and Dad at home any way possible. Just the thought of AL sent waves of guilt and failure through my soul. It was the good folks here that helped me see that not only was it not as bad as I envisioned but was probably the best thing I could do for Mom and Dad. By the time the decision had to be made it was not that bad because I realized that not only were Mom and Dad ready for the change but so was I.

Dad had a little trouble adjusting at first. He didn't understand what was going on but finally decided that he was ok as long as Mom was there. Mom loved it at first. No longer being saddled with the responsibility of cooking, cleaning, and financials she was able to relax. Then they both ended up with the flu. Dad bounced back rather quickly but Mom was sick for weeks. Three bouts with the flu, two bouts with pneumonia, drug reactions, a fall because of narcotic cough medication that severly sprained her neck, a urinary tract infection, and several sinus infactions later.... she had lost her ability socialize. When she doesn't feel good she takes it out on staff, family, and Dad with a vengence. When she is feeling good she doesn't understand why they shy away from her. She doesn't know what is wrong with those people because she doesn't remember what she has done to them... and it can't be her fault. She was the one that decided she needed to go home. But with medication adjustment they are both now relatively happy. The best part is they are getting their medication correctly, they are getting three good meals a day, and there is somebody down the hall when needed. They are both gaining weight and are happy more days than not..... and I sleep well at night knowing they are well taken care off.

I realized from Mom's words and actions, after the ALZ manifested itself, just how difficult it was for her to care for Dad all those years and the toll it had taken on her. The mom that carried so much for so long without a whimper becamse clinically depressed and that has not gone away. It truly wore her down. Dad's vascular dementia is different from ALZ. He has long periods of stability and though his short term memory is gone he still has some reasoning ability. He comes out with amazingly logical statements and observations but can't remember what he just came up with. For the most part he is in a relative good mood and can be easily diverted. Mom on the other hand has years of resentment and bitterness that had built up because she cared for her Mom with ALZ and her husband with VD for much of her latter adult life. Even if he doesn't complain this is taking a huge told on your Dad. Be mindful of giving him breaks, something to look forward to, and somebody to talk to. And if the time comes when this is wearing on him mentally and/or physically don't hesitate to move her or them. I don't regret the decision at all. I just wish we had done it a year earlier.....

Also take care of yourself. I spent so much time on the road (6 hour round trip to care for Mom and Dad repeated at least every 10 days to 2 weeks) and actually at Mom and Dad's (sometimes a week to 10 days at a time) plus trying to take care of everything here, throw in the stress, that I ended up health problems that it has taken a while to deal with. I actually put off going to the doctor until after Mom and Dad were in AL because I didn't have the time or energy to deal with my own problems. Don't do that to yourself!!

It does sound like you have a good handle on the moment. Just be aware that life can change in a moment and be prepared for anything.

I'm off to call Mom.... it is something I do daily (or more).

Love, deb