I need time for me, Mom won't cooperate. Any advice?

I know my mum wont go either shes entitled to a week every six months and refuses to go they become so selfish its hard as you cant make them.

If you are doing the caregiving, why does sister have poa? Without respite, you will no longer be able to care for your mom. That being said, it sounds to me as though your mother needs a higher level of care than one person can provide. Make your vacation plans and tell your sister when you'll be gone. It's HER responsibility to find care for mom. You can only be taken advantage of if you allow it.

If YOU are the caregiver, why does sis have poa? Arrange your vacation and tell your sister what dates you'll be gone. It's her job to arrange for mom's care. It also sounds like your mom is rounding the bend on needing a higher level of care.Tell sis it's time to look into assisted living.

Hello:
My mom just passed away on Friday. I am an only child and got little to no respite. You must at all cost take respite. You have your husband for support. Think of being on an airplane where they tell you to put your oxygen mask on first before you try to assist others. Any opportunity you get for respite you must take at all cost. If not, it is only to your detriment.
Please, take care of yourself, and helpful responses raised valid points. Folks only do to you what you allow.
Blessing and hugs...

and...I took care of mom for 71/2 years with little to no support....
Blessings

Good answers. I am naively amazed that this situation comes up over and over. The health POA is reluctant to become involved in the caregiving making it next to impossible for the caregiver to actually take positive steps to provide adequate care. I have come to the realization that I cannot make my mother "happy" with any single action. I can only create opportunities for her to be happy. It is not her, it is the disease. I can try and make sure she is safe and well cared for. No solution I have found has been perfect.

In my opinion, making hard decisions is the responsibility of the Health POA holder. It is also the responsibility of the family to assist and support where ever possible. It sounds like you are doing more than your share of caregiving right now. Your sister needs a reality check and telling her the dates you will be gone and actually leaving sounds like the wake up call she needs. If you are the person that is reluctant to see Mom in permanent assisted living/dementia care perhaps you need to support your sister with that decision. In my experience, people with dementia are unable to think so far ahead as to consider the impact of their decisions and immediate desires on their loved ones. The person stricken with dementia is often so involved with their own woes and ills they really cannot make good decisions with respect to their own care and balance that care against the welfare of others. Again, that is the disease, not your mother.

The FIRST thing I would do is to get mom's Power of Attorney and Healthcare Power of Attorney. No delays. This is VERY important. You will find yourself in a hot mess as her caregiver if you don't have these things. It's unconscionable that you, as her caregiver, don't already have them. Talk to your mom about it, and get it done this week. Your sister needs to know nothing about it. Just have the attorney include wording that says she revokes all previous powers of attorney she's executed.

As her caregiver, you have to recognize a couple of things. First, you are doing angel's work. How many people would put their lives on hold for a parent? Would your sister? Obviously not.

Next, your mom is becoming (or already is) selfish. It's part of growing old. One's universe gets smaller and smaller and smaller until the ONLY thing we care about is getting our needs met. That's it. And we will do anything and say anything to GET them met. Your mom doesn't CARE that you need respite. She doesn't CARE that you're sacrificing your own independence to help her keep hers. She isn't thinking clearly anymore. And you've got to realize that.

When it comes to MY mom, "I'm the boss, Applesauce." (I love that expression; you'll read it a lot from me. And mom HEARS it a lot. Ha!) I'm a benevolent dictator with mom since she moved in with me a year ago. Maggie! How can you say those things? Let me tell you why. (And remind you why you should, too.)

I get up twice a night so mom won't have urine-soaked briefs on (which would aggravate skin lesions and could contribute to bedsores as she sits in her wheelchair 15 hours a day.) I generally STAY up at 4 am because I can't get back to sleep. I cook all of her meals -- from scratch because she has heart failure and salt is her enemy. No processed food. No restaurant food. No carry-ins. I dress her. I do her laundry. I'm her little feet as she can't walk across the room for a glass of water. Or a Kleenex. Or a cookie. Or....anything. I belt her up and walk her to the bathroom five or six times a day. I walk her to the front window so she can peer out. I organize her meds; liaison with her doctors; take her to her appointments; pay her bills; watch over the home she left to a tenant; work with her therapists; put salve on her butt; wipe it; wash it; change her Depends 3 times a day; laugh with her; visit with her; joke with her; arrange social outings for her; try to keep her busy and happy.

And for being her willing slave? I know I deserve respite. I don't care whether or not she's happy about it, because she's in her own small little world. My "real mom" would be mortified with her current plight. But right now? She sucks the life right out of me and doesn't care. Hahahaha!!

I'm listing all of these things (and, believe me, there are plenty more, as you and others know) because you need to realize how VALUABLE you are to your mom. And that you are entitled to whatever respite you want and need. You cannot take good care of your mom if you don't take good care of yourself. Period.

So. My advice to you is to get your mom's POA and HCPOA; call senior social services in your area after that's done and tell them you're having trouble with your mom about respite care; if she has money, start spending it on her care and your respite; if she doesn't have money, get a reverse mortgage on her home so she does; and pat yourself on the back for being a wonderful, loving daughter. Because you are.

I feel for you - there is no easy answer but maybe my experience will help. Mum lives with me and hubby - dementia has set in the last few years but prior to that general confusion and mobility problems meant she could not be left along overnight. We had a wedding to go to abroad, taking us away for just four days - nobody to stay with mum so my son-in-law researched respite facilities and came up with a very good, but expensive, local place. However, the lead-in time for assessment of mum's needs etc., was far too long for this to be workable, and when I showed my mum the brochure she cried saying this wouldn't be a holiday for her as she wouldn't have anyone to talk to. Eventually, son-in-law's parents very kindly came to stay, and since then I have widened the network of people who are willing to do this. Now I can get a whole week away with a properly-paid live-in carer and my mum seems to accept that I need a holiday just to get a full night's sleep, which I don't get when I am home. I can tell you from experience of 7 years of this caring role that you MUST get your holiday - other contributors have impressed this on you. At the same time you MUST involve your sister - she has poa but it seems that she doesn't just have this over your mum, but over you too as she is dictating what you can and can't do with your own life. So, you either get a professional care giver in to stay with your mum and pass the bill to your sister, or you get her to look after your mother. And if she refuses you should take steps to remove the poa from her and do what is necessary with your mother's funds to allow you to live your life.

You don't ask permission of a dementia patient to get your needs met. That way lies madness and burnout.

I agree with ba9alou - trying to reason is useless because the patient doesn't have the capacity to understand - the important thing is to create a feeling of well-being and ensure that the person taking over the job of looking after mum while you're having your holiday, conveys a sense of warmth and security. This will help your mum to settle into a new relationship during your absence and this is one reason why it may be better for you to hire someone and bill your sister because if your sister is reluctant to care for your mum that feeling will be transmitted to her and she may become upset/difficult thus making future respite holidays harder for you rather than easier.

Maggie Marshall - I really agree with you - you do a lot more than I do as I have carers in three times a day to help with the toileting - my mum can't stand and theoretically needs a hoist but obviously when I'm alone I do the lifting by myself. I'm also in the night turning her over to prevent bedsores - and just occasionally when I do this, mum wakes and has a sane moment and realises what's happening - she says 'you shouldn't have to be doing this' and when that happens it reminds me that all the selfish behaviour I see now is purely and simply the result of the disease - that understanding keeps me going, probably you too

All these sibling issues, so glad to be an only child!!!
Back to the problem, if you are being pressured by the family to go on vacation or if you need to go on the trip, I think it would be better to just interview some live in home health aides from a respectable agency. Try to select one who seems to click with your mother. Pay for it out of your funds or your mother's savings. If it is a problem getting the money from your mother's savings, tell your sister you and she will "share" the cost. That should get a rise out of your sister, she will likely refuse to use her funds but perhaps she or one of her children can "free themselves up" to spend some "quality time " with your mother.

Going forward, if you wish to continue to care for your mother--respect that but don't depend on an undependable sister.

Caregiving (even if in separate houses) is demanding. For over a decade, I never took a vacation as I needed to be with my aging father. It is what it is.
After they are gone, you have all the time in the world to travel.

Good luck get the home health aide in there while you go on the trip.

First Off- I have been there... NO Rest No Respite when I took care of my Mom for one Year, and I have Fibromyalgia. There can be more then one of you the POA, your Mom has to sign it unless she not cognitive, then showing proof that you are a daughter or son you can also be a POA. My husband is a POA for my Mom like I am. and he is not even related, as long as your Mom approves it, signed in front of a notary and it will be notarized. The internet has a simple form..very simple form for a POA. You can Call the Department Of Aged in your state and ask them if you need the same POA form but just need to be added, or have seprete one. Make sure that it list any and every thing on that POA, for example POA on ALL medical POA on all real Estate etc...Again, If I were you, I would call your State of Aged. Some states call it differnt things, but here in Texas it is the Texas Department of Aged. Now, once that is done, which by the way takes no time at all to get a POA as long as you have it notarized. Then, you have the right to place your loved one in respite. Also, I would talk to your loved one about what you want to do, I would present it this way: Mom, you know I love you so much and want the very best for you, Mom, I want to stay healthy and rested so that I am ABLE to take care of you, and Mom in order to do that, I am going to need your help, for you to help me out with full filling that. I have a place all ready for you to rest so that I can rest..Let her know how much you adore her and need to be your best and well rested so that I can take care of you.

what I meant to say in the beginning of my note to you was.....at the time when I took care of my mom, I was exhausted and physcially sick with firbomyalgia and had no rest. Mom is now in a nurshing home now, but, I am talking when she lived in her house and I took care of her.. If I would of known what I know now, things would of been different, I would approach it like I said in the above article.

One more thing, I made sure that after my dad passed, that Me,my brother and sister are on the same bank account as my mom. In the POA also needs to be listed monies that you in case of death or what not, that you have POA on her money, and to add to that. Also, that the bank have you listed on her accounts, Payment Upon Death, unless she has any thing that would go into probate after death which they would freeze her money until the probate was cleared. I would make sure you have all of her bank accounts with you and who ever else your siblings are name on it, you dont have to though, it can just have your name added to it, as long as she signs a paper from the bank allowing that.

I am in the same position:( Looking forward to reading comments here......

Everyone is right that elderly people, especially with dementia, become "egocentric" no matter how unselfish they may have been in the past. They're old and frightened and their world has shrunk to a great degree. I recently had to make the difficult decision to put a beloved elderly relative into a nursing home -- some days he seems to accept it; others he begs to go home. It is heart-breaking and difficult but I just couldn't care for him anymore. At the very least do everything you can to at least get respite for yourself to help make it easier. I also cared [part-time] for my late mother, and had to fight a tendency to talk to her as if she was "normal" when I knew in my heart that we really had to humor her. She just didn't understand OUR needs, and she was a wonderful mother and person. As others have said, you can't wait for your mother's permission to have respite -- just do whatever you can to get it. Wish you the best.

Maggie:

You're wise, you're wonderful.

I am Nancy's caregiver 4 days a week, she suffers from some dementia but has struggled with mental illness most of her life. Her family is now ready to put her in a nursing home but are not preparing her in any way. The first time she will be aware of this is the day they take her and leave her there. I wonder if that is standard operating procedure with most of the elderly. I feel so sorry for her because nobody wants her or even really likes her. Her own sons can't be alone in the room with her without getting upset and exploding on her. Maybe she has brought this upon herself but it's still very sad. Should her family be preparing her in some way to face her upcoming placement?

heydeb, that's a tough call. it is an eternal conundrum on here when to take over decision making for an elder. I know I wanted nothing more than to let my mom have what she wanted in terms of where and how she lived, but at some point it finally became plain to me that what she wanted made no sense and would never be possible. when an elder says, effectively, by their behavior, "I want to stay here with you, have you take care of me, while I make your life miserable and stay miserable myself, until I die" I think a person has a right to say no, you can't have it that way, regardless of the person's mental status. Persons of sound mind, legally at least, can decide a lot of things for themselves even to their own detriment, though...problem is it may not be just them that their decisions effect. A person who has lost enough judgement and reasoning who becomes legally incompetent should still have their wishes respected - but only as far as reasonably possible, and a reasonable person has to make those calls.

So - decision has been made, and it is likely the right one. There is no hard and fast rule. Either preparing a person with visits and pictures and meeting people in advance if they are reasonable enough to benefit from that and accept the transition is needed, or just doing it when the time comes if attempting to prepare them will result in nothing but anxiety, anger and digging in of heels and possibly making the trip impossible without the use of force. The people who know her best should probably decide this, maybe with some input from the facility...but beware advice which starts wtih "its ALWAYS better to..."

The poster above who compared the situation to having a disagreeable cat has a point, but that analogy has its limits. If the cat was clawing and hurting people, you could not keep it. If it was just disagreeable, you'd roll your eyes and snap a funny picture when you could and post it on Facebook, but your whole life would not be consumed by it and its care the way it does with a fellow human being.

Dear Heydeb; I don't know about Nancy, but with my mom, with dementia, if we tell her about something much before it's going to happen, she worries, becomes weepy, hysterical, obsesses, imagines the worst things possible. It's become easier to tell her "the day of" events like doctor's appointments. She's less anxious and more accepting of things dealt with "in the moment".

"Once and adult, twice a child" . Our elderly parents resort back to being children.... who by their very nature are selfish and self centered. As Maggie said, their universe gets smaller and smaller until all they think about is themselves. Once you accept what is happening it will get easier! I agree with the other replies in that your priority should be to take your mother to an attorney or notary and get a new durable Power of Attorney and new Healthcare POA signed which revoke all previous POA's. At the moment your sister has all the power but you're doing all the work. It helps to try and keep a sense of humor and accept what is happening to them. Read Shakespeare's poem "The Seven Ages of Man" when you get a chance. I first heard it when I was at school when it didn't mean much but now - firmly part of the sandwich generation - I get it!

I agree with Maggie! Thay also get paranoid and thinking peopke are after them. My mom gets in that kind of mood sometimes and I tell thata she is getting paranoid. I take time for myself. Get a nurse to come in and watch her.

If your sister is anything like my oldest sister, she will not easily give up POA. I did not even bother to try and get POA as my mom's 24/7 caregiver. I just did what needed to be done and my sister and I had some real blowouts but I had done what was necessary anyway.

As for respite care - no - do not ask your mother if she wants to go. You never ask someone with AD if he or she WANTS to do something because the person will usually say no. Just arrange it and if need be, tell your mom a fiblet about where you are taking her on the day you do take her. I bet she will have a much better time than she or you realizes!

Wow you are doing so much and if you don't get respite I fear that you will burn out as I did. My biggest problem these last 3 years has been with respite. No matter how much people promise you - they rarely come thru - see it over and over on this blog. When I became assertive and put out my needs my sibs decided it was time for assisted living for Mums. Fine with me as I am not in the position to pay $5000/month. Got tired of knocking my head against the wall for respite anyway.

Missingout, have I got this right? - your mother lives in her own home. You and your husband take her anywhere she needs to be, and do a good deal for her, but you don't actually live with her, and she doesn't (yet) require continuous care, is that right?

The thing is, I'm not clear why you and your husband can't cross your fingers, go on vacation, and let her take the consequences of her own bizarre choice of caregiver. What's the worst that could happen? Certainly, if your mother has capacity, then I think in your place I'd be prepared to wash my hands of her, temporarily of course, if she rejected her own doctor's recommendation for respite care. Moreover, this is really for your mother and your POA sister to work out between them, isn't it?

It comes down to that thing of your carrying a responsibility without having the authority to manage it in a reasonable way. You can't order her into respite care. You can't insist that she selects caregivers you feel are up to the job. Ok fine, if she won't allow you to have that authority, she can have it her own way; but in that case neither can you be responsible for her while you and your husband have the break to which you are entitled.

Your sister, on the other hand, has willingly accepted POA. Mm-hm. Sounds like she needs to be reminded that that status DOES have implied responsibilities, don't you think?

Great answers here. I would like to add one thing, is that it would be hard to send anyone away who has fears and insecurities to a place that they are not used to for two weeks a year. Is there a way that mom can go to this place 2 or 3 times a week for day care? One, she will get to know the people and the place and will feel more comfortable going there for the two weeks. Two, it will give YOU a breather every week. And I fully agree that the caregiver MUST also be the POA. Good luck to you.

I know we all have to do things how we can, and I know it is hard for some people to be firm with their parents. BUT, you must. There is no reasoning that will be accepted and understood. She is selfish and afraid - like most older folks. I was at the point of making myself ill and hating my mother and mad the moment I set foot in her house. I finally had enough, told her how it was going to be and it worked....for me. I agree with the other posts that you most definitely should have the POA - what is up with your sister? Does she offer any moral support for you? Why does she have the POA and why is she the executor? Does she think it is reasonable that you do all the caregiving and she does none? That really stinks. Does she live in the same area? I wish I had a magic answer for you....I know it is agonizing for you on many levels. Stand your ground, get the POA or give your mother to your sister, but most importantly, get some fun & relaxation in your life.

Hey listen, you can't sacrifice your life and health for a parent with dementia. I did for nine years and I ended up having a nervous and mental breakdown. You have to do what you have to do to get your dementia ridden parents into full time permanent care.

in my case, it took a threatening letter to the family doctor - threatening class action from all the neighbors in our block of flats if a tragedy occurred. That got him moving. Mum wound up in hospital where they found her dementia was so bad, she should have been put in care five years previously.

mum is now in permanent secure accommodation. Fortunately she needs help to use the phone, otherwise I would have no peace.

but I had to revert to drastic action to save my own life.

A person, child of incapacitated parent, who is taking parent to doctors and other appointments and responsible for their care, must have health care power of attorney to discuss medications, treatments, etc. Get an attorney or social services rep to come to the house and have your mother sign papers to name you as that person terminating all previous POAs and also a durable financial power or attorney. If you are the person caring for her you have the power and resources to do it. An attorney or social services person can explain that to your mother and that would be better than you getting into a battle with the useless sister. Good Luck.