I feel like I am living groundhog day...

Taking care of your sister does not have to mean that you are caring for her. What happens if something happens to you?  Explore group home with her and see if there is one that fits her needs and that she is comfortable with. I have a friend with a son that he cared for for 22 years, not long ago he tried out an overnight in a group home and never looked back. My friend is actually feeling a little left out that he is no longer “needed”. They take him out on the weekend and he occasionally spends a night with them but is always happy to return to the group home. If your sister has an opportunity to become accustomed to the new setting it may relieve some of her anxiety over your parents aging and leaving her alone.

Youll be tending to your sister when they're gone. I felt this way with dad, 5 years. Not with mil, she is just another person to take care of and I've brought her into my home. You could sell your big home and see the world. Abandon ship. It's not your responsibility. It's an either or deal. I would bet your upbringing is why you are caring for your loved ones. Prayers up.

You are a kind soul Acaringneighbor. I believe we were put on this earth to help one another the best we can. I have also taken others out of town to MD appoints, etc before my Mom became ill and will continue to do the best I know how.

Encouraging to see others who try to help out, as they say "It takes a Village".

I help a friend down the street from my house...it does seem sometimes like Groundhog Day to me as well. I have a routine of, after taking care of my pets and starting my morning, I go to my friend's house and then...give water and medicine, fix breakfast, feed cats, make coffee, straighten things a bit, watch morning TV and visit a little, fix some lunch, go to my home to do a little of my housework before going to work, back to my friend's house, fix supper, feed cats, give medicine, go home, take care of my pets, eat, watch TV, go to bed.
The routine switches up a little during the week but it is basically the same. I know that my friend does well because I help and that encourages me and makes it worthwhile. And every once in a while my friend will be more cognizant and thank me for helping her. I'm doing what I'd want done if it was me who couldn't think clearly!

I don't live with my mother--thank goodness--but I do go and "help" her as much as brother will allow. Not much, really, and nothing of any real consequence. I'm DYING to get in and clean her apartment--today I ran up a pile of books and couldn't find an empty space to put them.

She was in a swivet b/c she said I never had flowers delivered to her sister. I told her that they were in fact, delivered last Friday and she started to fight with me. I bought them online with her little Ipad and SHE CHOSE the delivery day--even though I asked her about ten times if she really wanted these flowers to be sent 10 days AFTER the funeral. She kept touching the screen and then it would shift back and forth and we'd lose all the info.....she was driving me INSANE. (This 15 minute task took me 3 HOURS) Asked why she hadn't gotten a phone call to tell her they'd been delivered--I said she got an email, as did I. She doesn't 'do' the computer, so she fought me on that. I pulled up my email on my phone and she wouldn't look at it. I pulled up the email on her pad and she said "You KNOW I can't use that thing"---but all the info, of course was just as she'd ordered. I said, "Now call Bunny back and make sure she got the flowers" to which she replied "I HATE talking to her, you know that. I don't CARE if she got the stupid flowers."

Finally she just switches the TV channel to the basketball game she wanted to watch and turned it up LOUD. Began telling me how much she loves some member of the Jazz because he loves his mother so much, what would that be like? SHE'D never know.

OMgosh.

And she wonders why nobody comes to visit her.

I am grateful beyond words that I am able to control the boundaries between us. Everyday with her does indeed feel like every other day in the week.

I was there just under and hour and drove home clenching my teeth. We need to deep clean her place, it's filthy--but after today--and as simple and silly as it was--I have zero desire to do a thing for her.

I also feel like it's groundhog day. The chores at Dad's , his repetitive stories of yesteryears and though state pays me, I still get to go home to mom & try to be nice but annoyed because she's able bodied at 76 , but chooses to depend on me for all the errands , etc. because she never leaves the house except once every 3-4 mths. To grocery store for 2 hrs. Gosh I miss my privacy!
I have peace and quiet only when I sit in my mini-van (2nd homee & office!). My brother died 10 yrs ago , so it's my job, but it would be nice to get relief. Good luck to you too.

Remember toddler gates work well for aquainting the dementia patient with boundaries if you need to take a short walk. Be sure they are in a safe area. Use distraction for them. Television...coloring book activity...puzzle..etc...i have taught my mother her area of the house. Because one can't have them wandering the whole house this is dangerous you cannot watch them every second. You have to cook clean and take care of yourself as well. If they were in a retirement home they have perimeters there too. Do not feel bad about giving them perimeters. Thats why its better to move them into your home. I know financially the laws are messed up this way. Cuz they want to keep the elderly in their own place. But just not doable since elderly care is sooo expensive..if they need 24/7 care.
Hope this helps...

Helping mom 1. I can relate been doing this for 4 years. I have 9 grandkids only 3 in state. So this last year i loaded up my husband (hemipalegis)and mom (dementia) and we flew to Washington to see my 3 of my wonderful grandkids i hadn't seen in 4 years! And surprised them on Christmas day! We stayed in a rented home 5 blocks away from their place on a lake. It was so great! We stayed for 10 days. It wasn't easy with the 2 of them. But you need to get away from the hum drum and have something to look forward to.
Do this once a year. If you can also put your relative in respite for 30 days so u can take a break.Not cheap though if u put in retirement home. Sometimes u can pay for another family member or friend to take care of them for a week or 2 so u can get away. Even if its a sibling. If a friend be sure and pay them. If you know someone else in the same situation do a trade!

There are two or three issues that you are appear to be dealing with. Both are quite acceptable and shared by many on this list--- You are not alone! First is the fatigue and frustration from everyday caregiving for your mother. I find that it is helpful to take periodic breaks or respite for family. I try to arrange a mini-vacation very 4-6 months even if it just a long weekend. It is too easy to fall in the habit of doing it all. Discuss with the local agency on aging or social worker what options you might have for caregiver respite. The second issue is anxiety about what looms ahead with dealing with the home and continuing care. I truly share your pain as my mother and step father were both a bit of hoarders. When mother is napping I set a small goal of cleaning out one drawer or closet every week or two. It helps to not be overwhelmed and slowly see some gains. Planning for the future is also very helpful. Care for your sister may be a third issue that needs to be dealt with- Consider if you plan for her to live with you after your parents' death. What estate planning has occurred. Again there are resources in the community that you should be able to seek-out for future planning.

There are two or three issues that you are appear to be dealing with. Both are quite acceptable and shared by many on this list--- You are not alone! First is the fatigue and frustration from everyday caregiving for your mother. I find that it is helpful to take periodic breaks or respite for family. I try to arrange a mini-vacation very 4-6 months even if it just a long weekend. It is too easy to fall in the habit of doing it all. Discuss with the local agency on aging or social worker what options you might have for caregiver respite. The second issue is anxiety about what looms ahead with dealing with the home and continuing care. I truly share your pain as my mother and step father were both a bit of hoarders. When mother is napping I set a small goal of cleaning out one drawer or closet every week or two. It helps to not be overwhelmed and slowly see some gains. Planning for the future is also very helpful. Care for your sister may be a third issue that needs to be dealt with- Consider if you plan for her to live with you after your parents' death. What estate planning has occurred. Again there are resources in the community that you should be able to seek-out for future planning.

I just scrolled through all the comments and boy is there alot of good practical compassionate advice here! Great Forum!

Yes, I feel like that too and it's been two years for me as well. Neighbors ask if I still have my sanity! Yes I do but it's really hard to not let everything get to me. Bring in help..I know it's hard trust me.. just don't give up! And make a point of doing things for yourself. Sometimes I'm so tired I stay in the house but I feel better when I'm not there. So make a point to get outside!! Even if it is to take a walk. Good Luck!

helpingmom: During WWII, censorship of letters to their military LO was common practice. My late mother told me this MUCH LATER (almost at the end of her life) and she showed me the censored "notelets" mailed back home with the censorship stamp. I believe that #1 She was told not to talk it about while the war was raging or #2 She waited to long to talk about and her memory of it had faded, e.g. their was a "monkey pod" wood bowl that my dad had made and on the bottom of the bowl he wrote "made in Okinawa." When I questioned my mother about it and why she hadn't told me he was in Okinawa, her response was "She didn't know he was there."

Yes, I have found many things, Mom was 9 I believe when you got stamps for each family member for flour, sugar, coffee, etc during WW11, I found a book she had in her desk with her name and age and the stamps, letters from friends even as in grade school with making up a code so others did not know what they were saying, so many things I did not know.
As I have said never parted with anything, my daughter at 30, wears my Moms clothes she kept at that same age as vintage now and gets so many compliments.
helpingmom1

You're not alone in feeling this way. Start sorting through everything, little bits at a time. The bonus is that if you do, you might come across interesting bits of their lives that will likely prompt some lovely reminiscing and storytelling. Now is the time, and the gift of those moments sharing memories might make the monotony of the rest more tolerable.....there is a treasure trove of memories waiting for you to find. Label photographs and write everything down. At the same time, you will be reducing the job of decluttering in the future when you may not have the time nor energy. It's all good!

Clean out the clutter because you're the one in control. If the town has a social worker, call on their services. See if the town has a school that the sister can learn some (as she can) ADLs.

Groundhog day, lol. I'm sorry, but it's true that we often feel the boring repetition of "same sh#t, different day". I'm bored out of my mind with watching my mom shuffle around & constantly going to the store for supplies. I feel no purpose & no enjoyment in the last year. I pray to God that I can find something else to do soon, to make life worthwhile. I'm looking into the "foster grandparent" program 4 volunteer opportunity. Hope you can make a plan that will achieve some good results for you.✌

I agree with moecam..get sister some hands on training. Even a child or child like person can do chores, so give her some that will help her when she’s eventually in a group home or wherever. And it will help you too!

Set a timer for 15 minutes, grab a trash bag and throw stuff in it until the timer goes off. Eventually things will get cleared out. Better now than once everyone is dead and gone.
Blessings and hugs!

Start by cleaning out the junk - I get the feeling that the oppressiveness of that is sucking your life energy out of you so start a plan & stick to it ... just 30 minutes 4 times a week will make inroads - increase as time goes on & they are used to you doing so

Your sister needs to learn some independance so start training her by adding 1 job a month like sweeping kitchen floor 3 times a week or cleaning the bathroom but break this up into the sink then add the tub then add the floor then add the toilet - this will help her as much as it helps you - her accomplishments will up her self worth greatly which will help her later - then you must find a way to prepare her for the time when she won't have her parents

Oh I definitely empathize with you. I moved into my boyfriends parents house caring for them, both with dementia but expressed differently, and the Mrs. had Parkinson’s and the Mr. also had a bad heart valve and was grossly overweight. Because I knew them both when they were more in there sound minds, I was very tentative about changing routines or anything in the home because I wanted them to feel like this was their home and I wasn’t taking over. But with the progression of their conditions, I eventually did change things so I could run the house as a house manager. It was a transition from feeling like this was something temporary and that I was coming in to help, to accepting that this was my life now, took a while. In that transition I realized that for them to continue their life as it was at home I needed to stay because I had become the anchor. You do sound a little lost and alone (virtual hugs!!) as the one in charge, I would suggest you to go ahead and start changing things. It doesn’t have to be drastic but to be more functional is reasonable. And take a break. Hire someone for a couple hours, private care is more affordable, and either get out of the house or do a project while they keep them company. And that’s the best way to get to know the caregiver if they’re going to wind up being trustworthy for you to leave the house as well. Take care of yourself. Balance as much as possible. You have to stick up for yourself for your sanity and even doing the little things helps tremendously. God bless

Yes I can completely understand the day-after-day routine with nothing changing except the date. I retired from a fast paced career and sometimes miss the challenge. Good grief, now I often forget what day it is since they’re all pretty much the same. Since you are a retired nurse, perhaps if you think about the situation like you would if you were still working it might help. Example: you used to take breaks and vacations. How did you prepare for them with coverage and timing? You planned your fun holiday, got everything prepared in advance for your replacement as much as possible, and off you went, right? You didn’t say, “oh I can’t leave because the place will fall apart”. No. You planned well and went. You could do it again, with the proper planning and coverage, and take a well deserved week (or 2) to go somewhere and do something just for you. Even the planning and researching for the holiday would give you something out of the norm to do and be something to look forward to. Maybe it could be somewhere you’ve always wanted to go, (a bucket list trip?), maybe a place you might want to investigate for your “future” life, a week helping to build houses for Habitat, a week on your bum at the beach, whatever. My point is to try to plan and execute something fun and out of your normal daily grind.

A little anecdote about the bucket list...yesterday mom and I were watching the Rose Parade and I told her that attending it and watching the floats being assembled was on my bucket list. She didn’t remember what that meant so I told her it’s a list of things to do before one kicks the bucket. She laughed hysterically, then said “So why are you here instead of at the rose parade? Times a’wasting.” Don't I know it. Ha.

RedBerryFarm, You really hit it on the nose. I had really not even thought of that, but you are exactly right, we as nurses do this, it is just the way we think. My daughter is also a nurse who in fact worries about me and does come home from 3 hour away drive quite often and helps me, my Mom who I care for is also from an old catholic hospital nursing
school when they worked very hard (as she used to say) for her cap and would never dream of not wearing her nursing cap and white hose. The old days when you could tell the hospital staff apart!
Yes I am POA for everyone here, so I am also a secretary, but I have learned much from my dad as to medicare when I get that age which is approaching.
My parents could afford nursing care and we have had help here off and on. My mom is on hospice at this time. My sister is my nurses aid so to speak and I will always care for her as my husband had said he would when that time came. We live in a very small rural community with little resources.
Thanks to all for advice, wishing all a Happy New Year.
helpingmom1

Oh... us nurses find it so much easier to care for everyone else than we do for ourselves. It is such a part of our thinking.
You have stepped into the roles of administrator, nursing staff, resident psychologist, social services, housekeeping, laundry supervisor, and kitchen staff.... all rolled up into one person - YOU.
You have already been doing all of that for two years... and are wondering why it is a bit 'crazy-making'?! You are a HERO - a SUPER manager - a woman of great patience, skill and ability. (Yes... yes you ARE.) Bravo and kudos to you!

So... I would think that you have the POA for everyone there - so all decisions are up to you. It is very easy to have the ship run us, instead of us running the ship.

You DO have choices. They all seem to be dependent upon you, so tap into your 'nurse mode' and try to problem solve. You are obviously very capable, but no one can continually do everything for that amount of persons and not burn out themselves eventually.
What services are available in your area that could help you - and those in your care? There has to be something... somewhere.
What is the financial situation? What kind of help do they qualify for?
Would mom be better served moving to a place of assisted or long term care?
Would dad be better served in the same place (say, a double room, if available), with activities and persons of his own age for conversation and stimulation?

Who does sister have helping her besides you? What are her interests? Does she qualify for any kind of aid or help? Does she have some kind of part time job, even with her limited abilities? (Say, a Goodwill or some place that hires special needs persons) Perhaps then her mind will see the areas that she herself CAN do - and that will help her to cope a bit better (hopefully) to the changes that she will have to eventually face in the future. (Instead of daily viewing what she is so in dread of at home...) Just food for thought...

That does not mean that you do not care, or are somehow a failure... quite the opposite. A nurse knows when someone needs 'transfering' to another department or to a hospital when situations arise... as it is for the best of those in our care. We also know (down deep) when it is time to call in the reinforcements!

At least try to view the whole situation as one with MANY choices and possibilities - not of dreariness and despair for yourself or those that you love.
My hat goes off to you - indeed. Well- done.

Im curious why your sister, who is only mildly mentally handicapped, lives at home and is not in some kind of group home/sheltered employment situation?

That is something you could work on that might have a real effect on the quality of her life and yours.

The only constructive thing I can suggest is to look to the future. Eventually you will have to clean all this out, get rid of heaps, and also find a longer term solution for your sister and her problems. If you are like me, inertia sets in too early. If you can visualise 'the end', you can use this time to get things sorted now, and make things easier when the end comes. It gives a value to something that seems totally boring now. It isn't 'this year, next year, sometime, never', it is 'do it now when there is so much wasted time'. When you have finished, please could you come and do my spare room?

Yes, you are not alone.

2 years is a long time, you need to hire someone to come in and caregive while you go get a break.

It is so hard to be objective when we are mired in the day to day of caregiving. A change of scenery, days that are just about you and your wants and desires will give you a new outlook.

Do what ever you need to, to make this happen and take as long as you can. Weeks not days.

Hugs for all you do!