Hello, Everyone--

I'm the daughter of a mother patient. My father is my mother's primary caregiver. They both live at home, and both are 82 years old. I'm their only surviving offspring. (My brother died in 1991 at the age of 45 from cancer).

I'm wondering how best to support my father in the care of my mother. I ask him what he needs. I call and visit. Still, I'm not sure he always tells me what he'd really like me to do. I think he may still be trying to protect me a bit from what's going on (he's always been protective).

My problem is that I do not live in their town. My other problem is that I live only about 60 miles away from them. So...I'm not far enough away that I cannot be there, but I AM far enough away not to be there every day.

I work fulltime, but my youngest child just started college last fall. I also work from home (computer) and can set my own hours, pretty much.

I thought once that I should make a regular weekly visit. Take out some food, sit and listen, do small chores. That sounds right to me. However, my dad seems to want me to just call. I think he wants to stay as independent as he can for them for as long as he can.

Last year, he hurt his leg, and I went out several times a week. He couldn't care for himself or her, and he knew it. Thank God, he called me.

I guess I'm wondering if I should insist on doing more for him/them? I don't want to overstep my dad's independence. He's also my dad, and I've always respected his wishes.

Do you have any advice?

Thank you to any and all,

~ConnieK

ConnieK--
This is what worked well for me when my Mom was still mentally stable: I asked her if I could help her out so that I would not worry about her so much. I went to her house once a week (she lived 85 miles away) and did her grocery shopping, pharmacy pick-ups, cleaned her house and did some yardwork. Mom broke her pelvis about 8 years ago and was never really steady on her feet after that. I said "I know you'd be doing this stuff if you could. I would just feel better and sleep better if I knew you were letting me help you.". Because she was my Mom and didn't want to worry me, she went along with my "suggestion". This might work for you. Good luck!

Hello Connie,,what a great daughter you are!!! Your Dad is blessed to still be able to be independant enough to care for himself and your Mom.

When was your Mother diagnosed with dementia? How advanced to you feel she is? Is she still able to feed,,toilet,and dress herself? Does she still know you and know your Dad?

I'm sure that your Dad wants you to always just call,,because he "doesn't"want you to know how things really are. At least in his mind,,he can do it all,,and if you call first to let him know what day you are coming to see him and your Mom,,it gives him a chance to get things in order around the house.

If I may,,,I recommend that the next time you go to visit with your folks,,if your Mom takes a nap,,,I would ask Dad to sit down and have a talk with him. Let him know that although its not your intention to "over rule" his wishes,,he does need to understand the "importance to you to be with YOUR mother" as often as possible,,,cause one never knows when this horrible illness will totally rob her of her memory of you her daughter.

Its not uncommon for a spouse to be overly protective of their life partner,,even from one's own children. But the fact that both of your parents are up in years,,,and its just pretty much your Dad doing all and being all,,believe me,,it will take its toll on his health,mentally and physically.

So,,whenever possible,,be there as often as you can. And perhaps if you know any of their neighbors that are kind,,and would take the time to just "occasionally" drop by to say hi to your folks,,that would be great. That way if they suspect that something is wrong,,,they could call you and give you a heads up,,without your folks being so aware of it.

This is delicate,,but its most certainly a workable situation. I wish you the very best and alot of strength to get you thru the days ahead,,and to help your Dad. Please keep us updated on things. Peace

Thank you, DeeBee and Raven.

My mother still knows us, and she can feed herself and dress herself. She is developing some toileting and bathing problems. I've been reading on the site all morning today, trying to determine her "stage" number. In a book I have, I'm thinking she sounds like she is in the moderate stage.

I'm wondering what the difference is, if any, between AD and vascular dementia. I think she was diagnosed with dementia in 2006 (though I'm not sure the neurologist named it as AD, for sure). Dad said the doctor mentioned she must have had a stroke, or a mini-stroke, at some time in the past. The Dr. couldn't tell when. We couldn't place an event like that in her past, either.

My parents are a loving couple, married well over 60 years now. It shocked me a few weeks ago to watch my father clean my mother in the bathroom after one of her toileting "accidents" (soiling). I was so awe-struck; I just stood there. I felt guilty about just watching all the way home. Why didn't I tell him to just go and sit down and I'd take care of it? He wouldn't have let me, at least not the first time I was there to see it.

He is dealing with so much and tries not to "bother" me with it. I held it together until I got home, then cried over what I'm witnessing happening to both of them.

I do have a very busy work schedule, but I want to be there for him and for her. I guess I just need to find the right balance between what I need to do as their daughter and what they want me to do. Sometimes those things might be different.

I've jotted down the helpline number and may try giving that a call.

Talking with them both is very easy for me, and I will certainly keep doing that. I just thought it might be good to also seek out some advice from others who have gone through this.

Your stories of being the immediate caregivers are heartbreaking and inspiring at the same time. I'm so glad there's a forum like this available for caregivers. As their only surviving child, I'm fully aware that I could very well be a primary caregiver some day. If so, I will seek out all the help I can find to do the best by my parents that I can. They deserve nothing less.

You caregivers are CHAMPIONS! I'm reading about a lot of patience, heart, love, and self-sacrifice. I'm learning a lot reading your stories.

Warm wishes to you!

~ConnieK

I think your dad would appreciate the help, Connie. He'll need relief eventually. So he doesn't get burned out. Make him feel that you really care. You do, you know. That'll make him feel good. --Jim

Thank you, Jim.

Yes; maybe I do need to help protect him from burning himself out, even when he says they're "doing fine." That sounds like a good approach. That, and what DeeBee said about just saying that it would make ME feel better to be of more help (which is, maybe, what I'm coming to find out). He might respond to that well, too.

Thank you!

~ConnieK

Raven is right. I bet your Dad doesn't want you to know how bad things are. Before my FIL died, MIL would say "Dad had x bad days this week." But she would never describe what a bad day was. This was before we knew he had ALZ and she would tell each child just a portion of the problem and was careful to tell each one something different. No one knew what was going on until they all got together and started figuring out she was deliberately keeping us in the dark.

Thanks, Kathy. That might be at least partly true. I think it may have been more the case earlier on than it is now.

I do think there's a difference between hearing about the symptoms and seeing them for yourself, too. He has told me she has these "accidents," for example, but it was difficult to picture. They just didn't seem to happen when we were together. Now I know more what that's like (and it's happening more frequently, apparently, too).

I also think it's probably hard to communicate what's happening sometimes, because the primary caregiver is there every day, and it seems like good days and less good days sometimes run together for them. I have to remember that he is over 80 himself as well, and that's going to play a part in things--how he perceives what's happening and how he communicates that to me.

One way I think my being a bit apart from the day-to-day care will benefit our family is that maybe I can contribute to giving my Dad some perspective. The bigger picture, that kind of thing. I've yet to find my best and most appropriate place in the overall scheme of caring for my mother, I guess. That's what I'm shifting around to find.

Boy, this is a learning process for everyone involved, though, isn't it?

Thanks for posting!

~ConnieK

Although my parents are 10 years younger than yours and I live in the same town, you and I share the same story. There is such a fine line in dealing with "help versus intrusion". The mentality of "she's my wife and I'm going to take care of her" is noble, yet can be detrimental to their health.

A few things I did to help out in a subtle way:

I'd make extra when fixing meals for my family and drop off a few meals per week for my parents.

When it was no longer feasible to leave mom alone or take her with to run errands, etc. I would stop in a few times per week and tell dad that I had time to sit with mom if he had things to do and he never refused.

I did all the research on adult daycare and presented it to dad. It took a while for him to warm up to the idea but he eventually started taking her 1 day a week. Mom loved it and the day off revitalized him. They eventually worked their way up to 3 days per week.

It took over 1 year to convince him to have help with bathing, etc. He was not comfortable at all with the idea. It became such a chore that they both would be napping by 9AM on bath days. I found a gal who is a retired RN, goes to the same church and my parents have known her for a long time. She had done some home healthcare for a friends' mom so I contacted her and she agreed to help out THEN I approached my dad with it again. This time he agreed to meet with her. I had forewarned her that we may have to do some convincing and he agreed to having her come in 2 days a week, 4 hours per day. That ended up being a GODSEND for both mom & dad ... Judy insisted that dad go have coffee with "the guys" and socialize. Then she would quiz him when he got home as to who he visited with, etc. He got a kick out of it. Plus mom & Judy would have a big time .. she would do her hair, make-up and nails and mom felt like a princess the days that Judy came. Judy had dad get out mom's high school yearbooks and they would go thru them and discuss people they knew in common. I know dad scratched his head as to why he didn't have home healthcare sooner.

Unfortunately, we placed mom in a facility on May 15th. Although heartwrenching, it is best for all concerned. It has been much more difficult on dad than mom. He is looking much better but I know his heart is broken. Every time I think of him crawling into bed alone at night, I hurt for him. The bright side is that after a 5 year hiatus he is golfing again. We both visit mom daily and each day gets a little better.

I guess what I am trying to say in this long-winded post is that timing is everything and sometimes you have to come in the back door with ideas and allow dad the time to process it. Also, you don't want him to take it the wrong way that you may be critical of his caretaking.

Don't ever feel alone. Call your local AZ chapter--they can be a wealth of information. Come to this forum often..unfortunate to have this awful disease in common with so many but I have gained so much knowledge from this forum. Seek out friends, church members, etc. who have walked a mile in your shoes. Tap all resources. Don't try to carve the path thru the jungle by yourself.

I hope this helps and feel free to email me at anytime -- ctnusa@mindspring.com

Best of luck....

Connie, Don't take no for an answer. My dad was my mom's primary caretaker until he died suddenly of a heart attack. I had ABSOLUTELY no clue how hard he had it with my mom until that day. She moved in with me after and boy did I learn fast.

My dad was like yours, protective. But I truly believe in my soul if I had been more intent on helping and doing things for him that he would still be here today.

I don't mean to frighten you, only to pass on some lessons that I learned the hard way.

Connie, I also am in the same boat, but I live a little further away, I am 150 miles from my parents. My mom wasn't truly diagnosed until just recently, although we have known of her problems since late 2003, and my dad was in denial about her problem and he would not mention anything to the doctor on her annual dr visits. I now visit my parents every other weekend because of my job schedule, I am working a full and a part time job, plus working for my associates degree online. I am 48 years old and I have a 49 year old sister who lives in the same town I do and rarely visits my parents. I think she is kind of in a denial stage or cannot get involved for some reason except to make the doctor appointments. I am the one visiting and I am the one who is my father's sounding board. We believe she is in the late stage - she can feed herself, but eats only when you have the food on the table already prepared, she sleeps almost all the time, she has to be forced to bathe and cannot dress herself. Most of this I find out when I get to their house, my dad wants me to find out on my own so I can share my thoughts with him after I experience some of the things he has been thru, but since my sister doesn't come to see them, he tells her some of the details on the phone.

My real problem right now is the next step, I want to help my dad get his affairs in order. The only thing they have is a Will. There is no Power of Attorney, Living Will and no Health Care person named. The only thing we can do at this point is to have a Court Appointed Guardian named, but we don't know how to start going about that. Does anyone have any ideas or suggestions?

Thank You
Robin

Robin-- I would contact a good attorney who specializes in elder law. Alz. Assn. may be able to help you find someone nearby who has a good reputation. My godmother happened to already have a lawyer who had drawn up her will and DPOA back in 1998, but I suggested that we go back and "find out if there was anything else the lawyer would suggest" when I realized my godmother was having memory issues. She trusts this lawyer, so it was easier than I expected to arrange a meeting and complete the health-care arrangements.
I think any lawyer specializing in this area has seen your situation many times over and would be able to make some good suggestions about next steps. You probably will have to pay for even a detailed phone conversation with such a lawyer, but their expertise is totally worth it.
--Kathy

What an amazing and beautiful posting from Stacey. I think she has a blueprint for most of us.

The gentle approach and just being there unobtrusively and making no demands or edicts may bring your father to slowly accept assistance as Stacey's father did.

I wish you well and hope that you can slowly get your father to accept a bit of help as the first step in also keeping him healthy.

Hindsight is so easy. My husband went through this with his parents without ever really knowing the full extent of what his brother did to help them, as we lived 500 miles away, and the brother was in the same town. Only toward the end of his father's life were we fully informed. His mother and his brother were both worn out by it, I am convinced. 6 years after his father died, his mother and brother both died, his mother with dementia, and his brother from another cause but exacerbated by stress.

Now I have my mother living with me after she wore herself out caring for my father. In all those cases they didn't want us to worry, so we never got the whole story until a crisis happened. I think you are very lucky to be able to see your father weekly, and I hope you continue to do it -- there are lots of suggestions here for you to be able to be diplomatic. This is just more encouragement from one who has been there. Bless you for caring so much about your parents!

Connie,
Your story reminds me of mine, so I had to write. I'm the only child , and I live 65 miles away from my folks. Dad is the AD patient.. at stage 6 now.

Bless you for helping out your Dad.. he will need more help as your Mom's disease progresses.
Just offer..or better yet, just start doing! It's probably harder for men to ask for help, but they both are lucky parents to have you willing to help them out.

Mom never wanted to ask me for anything when I first started making my weekly visits. I actually gave up working one day a week to go down for those visits. But I know we're both glad that I made that decision.

Blessings to you,
BevP