When your Dad and your little sister lives with you in my home, how do I live my life without feeling guilty?

Hi Henryshelper! Let me tell you what I found to be helpful in my case. I am pretty much the sole caregiver for my mom who has dementia. My husband helps long enough so I can run to the grocery store at times, and we do have a home health aide coming now. Initially right after we moved my mom in with us I used to sleep in the recliner right outside of my mother's bedroom. At the time she would get up to use the bathroom every 2 hours and then would come out to recliner around 4:30-5:30 A.M. Finally after 2 months of this I was just exhausted and felt I had to get some rest. So I invested in a couple of baby monitors and door alarms (in case she tries to wander out the door at night) and started sleeping in my own bed with my husband where I belong! Instead of a urinal, I found that Depends work better in my mom's case. Ever since it has been working out SOOO much better as I am feeling much more rested these days now that I am not getting up every 2 hours to help her to the bathroom. I am also no longer getting up between 4:30-5:30 anymore either, which is WAY too early for me! Instead I go to bed at my usual time around 11:00-11:30 and get up between 6:30-7:30. My mom is generally incontinent every morning now, but that's okay because we just wait to change her Depends when we are BOTH up and it's been working out just fine! The other thing we had to do since my mom tried to leave a couple of times was to put up stop sign banners on both doors to deter her. This in addition to the door alarms seems to work just fine!

Also, in the beginning when we first moved her here I basically had no help other than a Home Health Aide that came twice a week strictly to giver her a shower. However, I did call our Area Office on Aging and found out they did have a program to help families by providing respite care a few hours a week based on the person's income. It took a couple of months (about 3 to be exact), but now they are sending a Home Health Aide out to provide respite care 15 hours per week. This is the amount of hours my mom qualified for at a reduced rate based on her income. Therefore, 3 days a week when the Aide comes I basically have 5 hours to do what I want, whether it be grocery shopping, going out to eat with my husband, going for a walk, etc.

Just recently every time the Aide came my mom started becoming increasingly agitated, started saying nasty things to both my husband and me as well as the caregiver (possibly to make us feel guilty for leaving), started trying to leave when the caregiver was here, and even became combative with the Aide. As a result I called the doctor and asked if he would prescribe something to keep her calm at night. Now she is on Lorazepam, and it seems to be doing wonders as we no longer have a battle on our hands every time the Aide comes. I do not feel guilty at all for getting respite care to help as my mother no longer remembers who I am most of the time and I have found that it helps me keep my sanity so I can deal with her better. In addition, after dealing with all of her nastiness over the past few weeks my husband and I have decided to take a week's vacation. During the time when we are gone she will either have to stay in a nursing home or memory care unit for respite care. Again, after all of the nasty things she has said to me (even though I know she doesn't know who I am anymore or what she's doing), I do not feel a bit guilty for taking a vacation from her as I deserve it for all of the C*** that I have put up with over the past few months! Even though it was my decision to move her in with us, I did not do so with the intention of doing it all myself and never getting any breaks! That would be insane! No, I deserve to maintain some sort of life of my own. Heck, my other 5 other siblings do! Other than a brother that comes to visit roughly once a month and helps handle her finances as the Financial POA no one else has to lift a finger! I realize that they all live too far away to help, and I knew that going into this. And even though my mom has been much more pleasant the past few nights since going on the Lorazepam, the things she said were extremely hurtful at times. Heck, I'm only human! And for my own health and well-being I just know that it is time to take a vacation so I can come back feeling refreshed instead of resentful.

Anyway, do yourself a favor. Do not listen to anybody else when it comes to trying to make you feel guilty. You alone are the only person that knows your limitations. If you feel as I do that you need to sleep in your own bed at night so you can get some rest rather than in the dining room then do so! If you feel that you need to maintain some sort of life by going out with your boyfriend or girlfriends then do it! If you need to take a vacation, then go - and don't let anyone tell you otherwise! If your sister wants to continue sleeping in the dining room with your dad then let her! If she tries to throw it back in your face again, you can tell her about this post! Then after 2 months when she is exhausted from not getting enough sleep at night you can throw it back in hers! lol No, not really, but you get my point.

I agree with CarlaCB that your dad should stop complaining and just be grateful that he's not in some facility somewhere and that he has his family there taking care of him. However, much like our situation even without the dementia, just know that you can only control your response to him and not his attitude. I have learned a lot about caregiving over the years, and one is that the person who is being cared for (as mentioned earlier) does not usually realize all that the caregiver is doing for them. They just know that they are sick or in pain and things are not the way they would like, so often they end up taking it out on the caregivers. This was often the case with my dad who became very grumpy and difficult to deal with at times prior to his death. You may just have to put up with it realizing that you are doing the very best that you can for your dad regardless of what he or your sister says.

It also seems to me that you and your sister need to work out a schedule so that each of you can leave and get some time to yourself. Seems like you both shouldn't have to be there all of the time. Sounds like your sister just has a "martyr mentality" and in the end she is the one that is going to wind up resentful while you have the healthier outlook and perspective on things. Perhaps she is just trying to make you out to be the "bad daughter" so she can be the "good daughter". What it all boils down to in a nutshell is that you have to know your own limitations so you don't end up getting sick yourself. Everyone is different, so what is best for one person isn't always what's best for another. Perhaps your sister is just a "superwoman." My guess is that she's not or she wouldn't be resorting to throwing things in your face. However, it certainly sounds as if you have a good idea by placing the monitors in the room so you can both get some rest. And so what if you don't want to give him a bath! Hire a home health aide to come in and do it for him! I know in my dad's case I gave him one bath before he died, and even though I bathed people of the opposite sex many times over the years as an Occupational Therapy Assistant, it's different with your own dad. I know that personally I felt a little awkward about it. Yes, this could go on for years, and you should not feel guilty at all about wanting to maintain some life of your own. You should feel proud of the way you are helping out your dad. PERIOD! Luckily, I have a sibling that tells me what a great job I'm doing. In fact just a couple of days ago he said that he didn't think mom would be here if she was still in the nursing home. So just remember that. Don't forget to be good to yourself, and reward yourself for the good things you are doing for your dad every day! And just like my brother and sister-in-law said to me when I told them we were going on vacation at the end of the month, they said, "You deserve it!"

Nicely put. You must remember it's ur home. Maybe sister doesn't likeshe has to depend on you.

You mentioned finding an in-person support group. I did that, too, and I will tell you it helped me keep my perspective. It's the best thing I did for myself.

But back to the question - I think it's probably normal to feel a little guilty even when we're not really doing anything wrong. A lot of us have an overactive conscience or we probably wouldn't be doing so much caregiving. It's just a bad thing when you let it rule your life.

Don't stop doing your own thing. You need to get out. If it means that your dad has to pay for someone to watch him while you're gone to help him if he falls, then that's the way it has to be. Notice I didn't suggest you ask your sister - if she's already against you going out then I suspect she's not going to be a reliable backup person.

So, my advice as I struggle with my own guilt, but:
1. Don't stop going out and doing your own thing.
2. Don't stop doing whatever relaxing things you might want to do in your own home, if that's possible.
3. Don't let anyone stop you from joining and regularly attending your support group. It might seem a little awkward the first few meetings but you'll get to vent and it will be with people who know you and your situation. After a while, it will probably become a good source of refuge.
4. Don't beat yourself up for feeling guilty but don't let it rule your life.
5. Remember that you're the one sharing your home and life with everyone else. If you were a selfish person, you wouldn't be doing all this to begin with, so just remind yourself of it.

Henryshelper, your situation is similar to mine in some respects. I'm also a daughter taking care of her elderly dad (and mom) in the home. They are age 90 and 89. My dad had a TBI in 2001 and is a major fall risk due to his balance and various issues with his feet. For years he has walked only short distances with a walker and uses a wheelchair the rest of the time. Since he's not physically able to use a urinal in bed, he wears an external catheter (overnight only) and we use a baby monitor for his bedroom. He also wears a regular, referee-type whistle around his neck, day and night, to alert us when he needs something.

The first thing that comes to mind is about your dad's mobility. If he's not exercising and just sitting around all day, how is he avoiding skin ulcers on his posterior? Does he shift his position frequently when he sits in a chair? Does he get up to the bathroom frequently or does he just sit for hours? Our experience with my dad was that his skin was fine during the first years after his TBI when he was going to adult day care 5 days a week, where they were getting him up every hour. But in 2013, when he was no longer able to attend and just sitting around at home, his skin started to break down. An alert agency caregiver noticed this, his dermatologist confirmed it, we scrambled to find a solution, and eventually bought an EASE cushion (a portable alternating air cushion with a pump) for his recliner and wheelchair, as well as a ROHO overlay via Amazon for his mattress. Problem solved. Every situation is different. I would suggest confirming with his doctor that his skin is currently okay and taking steps at home to keep it that way. As you may already know, a skin ulcer can take months (or longer) to get rid of once it becomes one. (Also, regular visits to a good podiatrist--and possibly an orthotist--now may help him avoid serious foot issues down the road.)

Regarding your dad's not wanting to exercise because he then feels too weak to walk, has he already had physical therapy and/or occupational therapy as recommended by his doctor? Has he been examined by his doctor recently and has the doctor confirmed he should continue the exercises? If so, perhaps your dad is just having trouble understanding how it works with muscle weakness--that when the muscles are out of condition it can be normal to feel weak after exercising, but that without exercise this is just going to get worse. Is it possible he just needs re-assurance from a health professional to feel confident that he can work through the problem he's having? (I know that muscle weakness was a very hard concept for me to understand years ago when I was working through a repetitive stress injury of my own; after various treatment the RSI pain went away, but by then I had become so weak in my shoulders and arms, since due to the pain at the time I had stopped doing the least little thing, even the dishes. I could barely brush my teeth. This got even worse till I had x-rays to confirm I had no shoulder injury. Then I started doing the recommended exercises with free weights and worked up from lifting 10.5 oz soup cans to eventually 5-10 pound weights over a period of months. But during those months it was so hard. I'd lift my little soup cans for two sets of 10 reps and then be too weak in my upper body to do anything else for a few hours--or sometimes a day or two.

Three things that have saved me from complete caregiver overwhelm over the past 2-1/2 years I've been with my parents are 1) being organized with my various lists, 2) staying one step ahead of problems that tend to crop up with my parents' health and so on, and 3) setting limits on what I will do.

Get as much (good) caregiving help for your dad as you can and/or adult day care, especially since with you and your sister both working you'll likely otherwise burn out fast. Some adult day care centers offer showers. Day care can be fairly affordable, considering all the care they provide. Someone else posted about getting a bath aide through Medicare. We did try this with my dad for a while but currently are using agency caregivers for showers. Hope your Dad's VA benefits will eventually be helpful for home care.

Regarding your own health, this is where the setting limits part is pretty important. There have been times over the past years that I've had to say no to one thing or another. Like when my chest starts feeling tight cause of all the stress I'm under. That's the time I take a step back. Could I thaw something out of the freezer for lunch or go to Subway instead of cooking from scratch that day? Could I ask my sister to stay with mom and dad for a couple hours while I catch a movie or hang out with some friends? You know yourself best. Figure out what works for you and find a way to get there in a way that will work for your dad and your sister. Sometimes it just takes patience with yourself and with each other to work through a family issue and find the solution that no one had thought of but that will be acceptable to all parties involved.

I think it's really hard for us as children sometimes to see things from our parents' perspective--the loss of independence, the sadness of not being able to think as clearly or to walk without a cane or a walker. I know this has been true for me. My mom and dad and I have regular 'health meetings' once or twice a month, where we discuss various aspects of their health (having regular bowel movements, daily dry eye treatment, and other stuff we're managing at home) as well as how they feel their care is going. During these discussions I also ask if there's anything special they'd like me to cook more often, is there anywhere special they'd like to go this week, is there anything they'd like to talk about that's bothering them about their care, and so on.

Also, other times I have found that when my dad is not wanting to do something he's supposed to do, that it helps to offer something in return. Like recently my dad didn't want to do exercises that his doctor wanted him to do to recondition himself from winter (we live in the snowy Midwest and don't get out as much in winter). I suggested that Mom might be willing to buy him the new electric shaver he wanted for his upcoming birthday... if he would just agree to do his new exercises regularly. It worked--because he wanted the shaver badly enough. Is there a 'shaver' you could offer Dad?

You sound like an intelligent, caring person who is doing her best to help her family. Very best wishes to you and bless your heart for your love for your dad.

If your Dad is Medicare eligible, and you have his doctor write an order for it, you should be able to have someone come to your home to bathe him a few times a week without any cost to you.

When were you able to get to this point? I'm just not happy. Love my Mom but don't like this dementia. One minute she knows where her b/r is and an hour later can't find it. Hate feeling the way I do but its always just me. My daughter was pregnant at 15 so no grandmom on the other side who was involved to give me some time to myself. My MIL never involved with my girls. With this GS other grandmother works and grandfather not comfortable taking care of a little one. So, no sharing there. I do have a great husband. Hopefully Spring will help.

Ah, this brings back memories. My heart is with you. My dad, who passed at 89 last August, was a vet as well. We wanted to help him remain as independent as possible, but brought in as much help as he would tolerate to keep him clean and safe. He was also a bit of a fall risk, so between my husband and I, and an aunt, we were checking on him often.

As my dad's health declined a little more, I asked his doctor to put him on hospice early. It's not a death sentence nor does it incur negative karma, but we were able to get my dad some extra help and visits from a nurse, a (male) health care aide, a PT/OT, etc.. If the six months were to elapse, he would have been re-reviewed and another round of hospice would be in order. I also brought in a caregiver husband and wife team, who were able to check on Dad, plus stay during the evening to morning hours.

Between his medical plan (Medicare in your area?) and/or his primary physician, you can check to see if this is a possible route for you. The biggest thing I learned was that it was better to ask for help and have professional caregivers step in, so that I could be a daughter to my father instead of trying to be everything and everybody.

It's an emotional roller coaster and slippery slope. My mom passed in 2010 and the experience taught me to do my best, stay present and cherish what little time we had left, and to not beat myself up. I promised myself to do the same for my dad - to take care of him, get more help before burning out, take little breaks, and stay as present as possible.

Sorry, I would feel uncomfortable washing my Dad. I pay a friend of my daughters to shower my Mom. She is an aide. Your Dad must get SS. I would use whatever money he has for his care. Mom gets $200 a month in pension. I use that for whatever she needs. Right now her SS is taking care of a house she still owns. Please don't feel guilty about taking time for urself. Your sister has that option too. Not ur fault that she doesn't take advantage of it.

No way! My sister's stood their ground, if I did not bathe my mother and take care of her bathroom issues they were not going to help in anyway. My mother-in-law expected me to help in the shower too. My sister's constantly accused me of not doing enough. At one point I hung a big chart in the dining room. I had all chores equally divided. I hired a "at home care" company to come in for three hours, $60 (their minimum) a week for the shower. They also did mom's laundry and house cleaning. After a while I had 24hr. care in the home for her. My sisters still complained. In fact, no matter what I did they complained. That was our whole relationship, them harping on me, never thanking me, and not helping at all, because I would not change my mother's Depends. I am a modest person and it is not in my nature to be cruel in return. They wanted my brother's to change the Depends also and the sister's constantly complained about them too. I came to realize no matter how much I did, they were still going to be mean to me. Finally we put my mom in a facility and it changed my life 100% for the better. My sister's will never talk to me again, and that's okay, they are toxic. My mother's care in the facility was wonderful, my brothers and their children would visit everyday and they loved it. When your life is turned upside down and you are not happy, its time for a change, a big change. You deserve to be happy, so does your sister. Its time to send dad off to a place with skilled workers, and time for you to enjoy yourself again. My mother enjoyed the place, the food, the entertainment, the assistance she received and her small apartment, furnished with her things. That made my sisters even more angry and they refused to visit her, until the end after we notified them. Last thing my mom heard out of them was yelling at us and the lovely nurses, they left in a huff after 15 minutes and never told my mom they love her or said goodbye. Understand that you can't make others be grateful and happy, but you can take the steps to make yourself happy again. Pick up the phone and check out all the places near you, I was pleasantly surprised and it was the best thing for my mom, my husband, my children, my brothers, their young children and myself. We wished we did it five years earlier!

Just hang on a minute. You have your sister LIVE with you, you have your ailing Dad LIVE with you and YOU are feeling guilty? No no no no no - it seems to me that far from guilty you should definitely feel able to control the situation but it will take determination. If your sister wants to continue living there then she has to abide by house rules and that is sleep elsewhere than the dining room. Its YOUR house stamp your authority but just be aware that if she chose to move out you would be down an income and down a support. However that may not be a worse situation than you are in now.

I am a great advocate of picking your battles - no point exerting a lot of energy into a lost cause so when she next suggests that you do more TELL her what you are going to do and TELL her what she is going to do. You could say that by sleeping in the same room as him she is depriving herself of sleep which is not acceptable (if you want to wrap it up nicely although I wouldnt bother) When all is said and done she might pay rent but she has no responsibility attached. You on the other hand hold all the responsibility. Feeling guilty? Pffft take control and feel good about yourself you are L'Oreal - ie youre worth it

You mentioned the VA is there any help avaib\lable from there. You too sisters seem to have equal responsibility and therefor choices without resorting to guilt, if you want two evenings out then sis is entitled to the same. Having Dad go to a residentail VA home might have to be the answer as he is declining so rapidly. I understand your reticence about sponge bathing you dad but it can be done without stripping him naked. You uncover each part you are going to wash then recover. When you get to the private paths place a towel over him then remove his underwear with out exposing him. hand him the prepared wash cloth to clean himself under the towel. He hands back the wash cloth and you rinse and return and provide a small towel to dry then you pull up the pants under the towel. Have hin roll over than you can wash his buttocks without embarassment. you can even step out of the room while he washes himself leaving a couple of washclothes within easy reach. other than that hire a bath aide 2-3 times a week. I understand you difficulties with a parent of the oposite sex but it is probably more of a concern for you than him. If he was able to get some physical therapy that would strengthen his legs. theere mau be also splints that would help his hands.

Let us know if you just want to rant. We understand that too. It helps.

Just to answer a few of your questions. My dad has use of only two fingers we tried acupuncture And they will not do carpal tunnel surgery. So he cannot do a whole lot with his hands he only has use of the two fingers hence dressing helping him with this clothing etc. etc.
Yes my sister pays me rent. and we both work full-time.
Our father moved in with us as he wasn't comfortable driving in September. something happened in January were not sure what because of no diagnosis ( until the recent MRI and ultrasound ) he has gone downhill pretty rapidly since then.

First let me say thank -you for all of the suggestions and just an outlet . I am looking for a "live "support group to join. I just today decided I needed to reach out to other people taking care of their elderly parent ....to not feel number one so frustrated ,number two so alone ,number three see how everybody else was doing.

You need to learn to set your boundaries and stick to them. Every caregiver has limits, or should have. And you are entitled to set your limits. Set them, tell your sister and father, and then accept that they may not like your limits. So what! Your sister is not your keeper. Neither is your father. They too are entitled to their feelings. You do not have to agree. But you are thinking your sister has to agree with you and she is thinking you must agree with her. Nope. She can sleep in the dining room if that is her choice. You put the monitor up, and go to bed as your choice. You cannot take care of anyone if you are worn out and tired.

Can you check to see if there are classes on caregiving in your area? Many local colleges offer them and they are frequently free or $10. They may help you understand your fathers perspective. They will help with your sister, too. It sounds a lot like your sister is acting out good child bad child games, and that is not helpful.

Most people who need care are frustrated and angry, and the caregiver, especially family members, are frequent targets of this. Your father may be frustrated and is just lashing out. Or he may be buying into the good child bad child scenario. Since his mind is fine, ask him, directly. You don't need games, you need honest communication and cooperation.

You do not say if you and sister are working. If you are both full time caregivers sharing this duty, then you need to have an honest, open chat. If one of you works, then you need to come to some formal agreement on division of work. It sounds as if there is a power struggle. If one is working and one is not, there may be some misconceptions about equal contribution shares and who does more. Frequently the one contributing a larger financial portion feels as if they should have more control and the one contributing more caregiver hours feels put upon or taken advantage of. Maybe some heart to heart talks could help?

You are not wrong for wanting some social life and some off-time or away time. Both of you actually need that, whether your sister thinks so or not. This could be a few long years or many long years.

Henryshelper, check out some of the elder care catalogs for things that your Dad could use to help himself with dressing, and other chores.

Suggestion, go to the blue bar near the top of the page... click on ELDER CARE... now find the subject "senior care products" which have advertisements. There are a lot of good catalogs on the internet, too.

One of my questions is why your sister moved in with you years ago. Do you both work? Do you both contribute to the household expenses? I don't understand why she is in a position of questioning what you do. I also wondered why she doesn't get out with her friends. It seems like with two of you there, your father should be well covered.

I agree that both of you should be sleeping in your rooms, especially since your father has a urinal. The monitor sounds like a good idea. I think your sister would be happier if she returned to her room and quit resenting you for sleeping in yours. I agree with everything you are doing. Your father is well covered. I don't understand why he can't bathe himself, since only his right hand is handicapped. Could he regain use of the hand if they did the surgery for carpals tunnel on it?

My father is 84 years old. As far as his health he was in very good health until about a year ago his ankle dislocated and broke the bone next to it . it compounded and all the nerves and everything came out so we had to have surgery and have that fixed. Ever since then he's been extremely weak in his legs and has a lot of nerve damage in his legs he takes restless leg syndrome three times a day his hands have such bad neuropathy and carpal tunnel that he has use of only two fingers on his right hand. We have to assist him with absolutely everything.... pulling his pants down pulling them up ,dressing him undressing him ,washing him . The only thing he can do the only thing he can do on his own is feed his self.
He would not get diagnosed. Until a few weeks ago he agreed to the MRI and the ultrasound. And some bloodwork.
He does try to exercise some of the claims when he exercises his legs he gets too weak to walk or do anything else. His mind is fine as physical body is failing him I guess that's the best I can explain the situation

Henryshelper, could you give us some more information, such as your Dad's age and what are his medical issues? Is he mobile? Is he able to dress himself? Sounds like he won't take a bath or use the shower [which is a common issue with many elders as they fear falling] since you need to give him a sponge bath.

What can your Dad for himself to help him feel useful? I think the more he can do, the better HE would feel.

Wow, I think you're doing a whole lot by moving your father in with you and caring for him at home. I don't know what your sister is doing that you're not doing (other than sleeping next to him, which you feel is unnecessary) but it sounds like maybe she needs to do less, not you need to do more. You should not feel guilty for going out and seeing friends, or having a boyfriend. You're entitled to a life too. And you're right, this could go on for years and you can't put off living your life for years. Or if you could, you shouldn't.

I don't know what your father thinks you should be doing but I think it's a lot that you've taken him in instead of leaving him alone at home or in a facility. In my opinion he should be grateful to be living with family who take care of him, and shouldn't be complaining.