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I just joined this forum and this is my first post. I'm extremely thankful for this forum because it has helped me maintain my sanity through my years of caregiving for my mother who is over 90 years old. She has Parkinsons and early stage dementia. But right now I'm beyond burnout. I'm exhausted and angry and feel like screaming all the time. I know my situation is not as challenging as others, so when I read their posts it gives me strength to know that others are coping with situations that are more difficult than mine. I am thinking of placing my mother in a facility, but how do you know when it's time?

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Candlelight, welcome. My answer to when do you know it is time? When you start asking yourself "when is it time?"

You have done plenty, you have done your time. Ask yourself if your mom would have wanted to burden you in this way. Most of us would hear "no" from our folks. They would want us to live our lives. And that is ok to say you cannot do it anymore. We all reach the point where the caring is too much and taking too much from and out of us.
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Gladimhere is right. Have faith in yourself to know when it’s time to place her. Your description of your emotions and mood indicates the time has come. It’s not that your situation is any less taxing on you than each of our’s. It’s just different.

A physical disability like PD coupled with dementia is a double whammy. My husband is bed ridden and dementia runs in his family. I dread the day when I start to see signs in him.

This process will not be easy. Start now to research facilities around you, both on the Internet, where you will find ratings, and narrow the list down to visit some in person. If you can have an honest conversation with Mom, do so. If not, there is a lot of good advice here on how to prepare for the transition from home care to care in a facility.

And, come back whenever you need to. We are open 24/7!
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Others have answered well as to how to know when it is time.

I'm going to second the point of visiting facilities and am going to add that even if you aren't certain, get your Mom's name on the waiting list. We didn't do that because Mom didn't want to move at that time (she was still competent) and we were trying to respect her wishes. However this last summer her forgetfulness changed into dementia quite quickly and now we are having to wait for an opening in the AL of our choice.

If there is an opening, and you aren't ready yet, you can just pass and they will keep your name on the list. And then there is a much better chance that you will be able to get in where you want to when the time is right.

I also want to repeat what my brother told Mom about why she needed AL. He said the goal was to keep her safe and happy. But that the goal was also to keep all her children safe and happy. And if you are angry and feeling like screaming all the time you are not safe (the stress hurts your health) or happy. Your needs are as important as your mom's, and you need to honor them.
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Candlelight, one can be overwhelmed just doing the logistics and not being hands-on... I know I had crashed and burned twice from the stress.

Since you are already feeling the effects of burnout, wanting to scream is major, it's not going to change unless there are changes made toward the care of your Mom. Almost 40% of caregivers pass away leaving behind the love one they were caring. So ask yourself, do you want to risk those terrible odds by hanging in there caring for your Mom.

Since your Mom's dementia is just starting, now would be the right time to move Mom into an Assisted Living orMemory Care, if that is within the budget, or to a nursing home if Mom needs Medicaid to help pay for her care. This way, she would still be able to learn the layout of the facility, learn the Staff, and still be able to make new friends :)

I was lucky, my Dad (90+) told me it was time for him to move to senior living, and he was happy as a clam living there, being around people closer to his own generation... as he would say "more new ears to hear his stories".

Let us know what you decide.
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It's time!
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Thank you all for the wonderful support and advice. I have started the process of researching facilities to see which one is best. She is already on Medicaid and has long term care so that will certainly take care of the costs. Let me also add that she had a stroke earlier this year and lost most of her memory, especially her recent memories. Freqflyer, you mentioned assisted living but from my understanding of ALFs, I'm not sure this is suitable for her. She needs someone to fully manager her schedule, prepare her meals, tell her when its time to eat, take her to the bathroom from time to time, etc. You also mentioned Memory Care, but I don't know what this is. If you or anyone else could please explain, I would appreciate it. And thanks again for all the help.
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Candlelight,
It's smart to allow yourself enough time to look around, do your research and not have to do it when there is a crisis. It's very stressful, if there is a crisis and you have to rush.

Ref. Memory Care. I suppose that it depends on the state, but, in my state, Memory Care is paid for by a state program that is similar to Medicaid, called Special Assistance. They also pay for refular AL in cases where the doctor says it is necessary. This is for people who need help with meals, medication, bathing, dressing, etc. and they meet the financial requirements, of course. I've heard that some states do not have programs that pay for this and that in their state, Medicaid only covers nursing homes. I have read that dementia patients are accepted in nursing homes, but, I can't imagine how that would work for my LO, since she didn't need skilled nursing care, plus, she was quite mobile scooting around in her wheelchair. (She did need all other total care though and was double incontinent.)

I think that in most states, there will need to be an assessment done to determine what level of care that she needs. My LO did well in a regular AL at first, but, soon progressed rapidly and I had to transfer her to a Secure Memory Care unit, by doctor's orders. I'd ask a lot of questions at the regular AL's and observe just how much one on one care they can provide, because, I learned that they could assist, support and remind the resident, but, they were not equipped or trained to really provide the constant and direct supervision that a person with dementia requires. In regular AL, the staff seemed baffled by some of my LO's behavior, confused, frustrated and pretty useless in some cases, but, the Memory Care staff knew what they were seeing. They didn't throw their hands up if she resisted care, but, worked with her and showed her patience. She seemed to be much more comfortable there too, as it seemed she sensed they were able to take care of her.

I'd discuss it with some of the professionals and see what might be the best fir for her.
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I am finding it so hard to decide if it is time for my partner to go into care because most of the day I seem to manage as he just sits watching the television all day and calls me wherever I leave the room but late afternoon and early morning are so hard to cope as he completely changes into a frightened distressed and worried person who does not remember where the toilet or other rooms are in the bungalow. I think it is very hard to know when its time for more care
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I researched information for my dad because he asked about Assisted Living because at this time mom could walk, feed herself. But, Dad said he wasn't ready; So I put the information in a drawer and told him when the time comes I had this, 3 months later it was time. My dad as the main caregiver crying because he was Emotionally and Physically exhausted and felt so guilty for feeling this way. But the time had come and he knew it, After mom had to lay in the floor to sleep because dad could not pick her up, He knew then it was time. No way was this an easy decision, very hard but after took her to hospital because of the fall and she was evaluated on mental ward at a very good hospital; They confirmed what we already knew in our heart.
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I know exactly what you are feeling. My 93 year old mother lived with e for almost two years. I became resentful for all the work. She did nothing for herself and I felt so overworked (I am 70 years old) and could not handle it either. It is time when you feel like this. Trust me it will not get better only worse. Both of you will be happier. My mother is very happier living in her new "home". I am too. good luck
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Candlelight now is the time. Your Mom is over 90 years hence You must be 60 + years Yourself. You have been Caring for Your Mom
for years now, and with Parkinson's plus a stroke and dementia just starting it is now time to have Your Mom Cared for by a Team of Experts in a Full time Care Facility where Your Mom will receive the best of Care round the clock Who will be able to monoter Your
Moms condition 24/7. After all You are now approaching Your golden years and You kneed lots of rest and sleep and peace. You
are a wonderful Daughter to have Cared for Your Mom all these years, but You can not do it all on Your own. It's time. Remember Candlelight to keep Logging in to this wonderful Site because every Person Here Cares, and so many are on a similar journey. I wish You and Your beautiful Mom great peace.
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Bubblespop, you have explained my situation exactly. My mom woke me at 1:00 am this morning insisting on taking a bath, and I just woke and found her hanging off the bed and the bed in total disarray and it's very hard for me to lift her as she could not get back on the bed herself. Like you, she is managable during the day but between 8pm and 8am its impossible. That makes the decision to move them to a facility very difficult as there is not a lot of support for the decision to place them in a facility because when family and friends come to visit, they seem ok but its during the night that everything goes awry.
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Johnjoe, thanks for your kind words. I am in the process of researching facilities to find a suitable one. Thanks you all for your support and understanding.
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I too wish to add that your mom will probably thrive in AL. they will feel a community of sorts and also be involved and looked after so you can be a daughter. Not that you will be on easy street after her moving as things pop up that you will be involved in but it will ease the strain and stress. Your mom may go through an adjustment period at first so don’t despair if she isn’t happy in the beginning. That’s can be a normal phase. But yes...indeed it’s time. Best to you and let us know how it goes.
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Great and useful advice here...as always. Once your loved one is settled into her new community...and this may take time...you will be so happy having time to nurture and take care of you. Yes, it's time. I placed my mom a little over six months ago...moved her 400 miles to live where I live. Best decision for both of us. I could never be her full time caregiver. Now I visit every day, bring my grandchildren or a friend at times, and even though she is not the happiest cheerleader on the block, I know this is the best arrangement for both of us.
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If you have a Senior Housing Specialist in your area, get in touch with one. There is no cost to you, and they will help you search until you find the place that is best suited for your Mom. I contacted a Senior Housing Specialist and she helped me through so much! My Mom and Dad are now in an Adult Family Home that they love, and is only 3 miles from me.
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"She has Parkinsons and early stage dementia. But right now I'm beyond burnout. I'm exhausted and angry and feel like screaming all the time."

I think you answered your own question. It's time!
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My 89yr old mom has advanced Parkinson's disease and early dementia. She had lived with me from Feb. 2013 - Oct. 2016 (3yrs 8mons). I had to place her in a memory care facility for my health. I became withdrawn, depressed, overweight, high blood pressure to name a few. I totally agree, if you are questioning when it is time, the answer is now. It took me a good 6mons to stop feeling guilty for moving her, but I am 60, divorced after 31yrs of marriage and MUST think of ME at this stage. My mom is 4 miles from me. We all do our best for the ones we love, but.... when it takes a toll on us mentally, physically and socially then changes must be made.
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Good morning everyone...gee, it seems like the above stories are exactly like my situation. I am 72, my husband's caregiver. He is 84 also with Dimentia and what they call Parkinsonism...I guess the full blown will arrive sooner than later..I recently had surgery and am not permitted to lift and of course my hubby is dead weight. I feel it is time to place my husband in a facility and I found out that I can apply for Medicaid; we do not have long term care. He is a Veteran and also found out they have foster care but they take his whole pension and part of social security which would put me out on the street...so I need to speak to a Medicaid specialist to find out all the information. When placing your loved one you also need to speak to an Ombudsman for your State; very important to find out which facilities have the best ratings...recently my husband went to a local facility while I was having surgery and found out that he was abused by an aide...so you must check out the facilities carefully and find out if they have security cameras to check on their family member...check out their ratings on line...if you have the monetary means to keep your loved one home and hire a full time aide, that is always a better choice but that not always works out either...we all are struggling to maintain our lives. You also have to find out if that facility just keeps medicating the patient to keep them "quiet"....they do that, you know....that is why if I do place my husband I want to find out if I can put in a nanny cam because I trust no one after what I saw an aide did to him...and they lie about it too. Then I found out about Pallative care at home and I told them the same thing...you are not coming into my home to "medicate" my husband so he becomes a zombie...so this whole ordeal is a catch 22...if you have funds, great...if you cannot afford full time care, you need to do your homework and find a loving facility that actually cares for their patients the same way you would care for them at home and not just leave them lay there in poop and pee; now you know why nursing homes smell when you walk in the door...so this is another dilemma ...finding the right place and to see if Medicaid will cover the expense. You can also speak to a social worker and they can direct you to the right people to speak to...
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Your question takes me back to a tough time in caring for my mother. You reach those moments many times but I'd say you have reached that pivotal moment. I would start looking around for what is the best place available so you will at least feel comfortable with where she will receive care. Good luck to you.
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Just want to second that idea of getting their name on the admissions list now. The better facilities can have long waits. We had to wait 5 months for Dad's placement. It was a verydifficult five months.
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It is not just when she is ready but also when you are ready & it sounds like you're there now - remember if you wait too long then she will have a harder time adjusting - my mom still could participate in group activities in the NH - this got her in the habit of going to activities [she averages about 10 a week now] so it is part of her routine now even in severe dementia - I am glad that I did it when I did because we are all better off now especially mom

By my math you are probably in your 60's so there is a good chance you have so health issues too so make sure you are staying on top of your own issues
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Candlelight, there's just one point you mention that made me look over the top of my spectacles at you, virtually speaking.

It's this worry about feeling awful because daytime visitors might think mother is fine, whereas if they witnessed what she was like overnight they would have a better understanding of why she needs the support of full-time care.

It would be nice to know that you have friends' and family's approval, of course. But the sooner you ditch that as a factor in decision-making, the better. You are the one with all the information. You are the one having to make the right decision for your mother. What other people think about it is just going to have to be up to them, and if they wish to express an opinion they must first get to know exactly what they're talking about.
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I agree with everyone, it’s time to get and live your life again. You don’t want to feel resentment. I’m posting because if you do look for a place, be SURE to google and research the place you consider first. Look for all complaints and reviews 2nd. I can tell you, due to personal experience with my Mother and ALOT of research after the fact, whatever you do, you shouldn’t use a Brookdale facility. My Mother only went for physical therapy after a major surgery, thankfully only a week, which was way too long. My details are posted on a public Facebook post under Brenda C. The posts all over online are horrible and very sad. The neglect going on is unconscionable and inhumane. This place apparently only cares about profit and it’s apparent from the posts from employees. They had a 6.4 billion dollar revenue and Smith, the CEO/President, received over 6,000,000 in salary and compensation. It is a danger zone waiting for your loved one. Read the posting by the BBB. I just feel I must (and have been) informing all I can about them. They are the leader in assisted living/retirement facilities in America. Best wishes for you in finding the perfect, safe and happy place.
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Yes, it is time. I agree that when you start asking is it time, it's time. My mom was very resistant and stubborn -- she's a Taurus. :( It took four months (and I live four states away from here, so I had to spend all that time away from work) and four doctors telling her that she couldn't live on her own before she agreed, but I had started looking at places, taking her to the ones I liked best, fighting with her long term care company, and caring for her myself before we could work things out. Make sure to check the elimination period on her long term care policy. My mom's was 90 days, and Banker's Life out and out lied to me about what that meant. The rep (now fired) said that family provided care counted toward that. Even better, she said that KS had an unusually progressive law that allowed one day of family-provided care to count toward three days of the elimination period. I should have caught on when she used the word "progressive" in regard to KS! My mom LOVES her new community and new life. She loves the staff and her new friends (turned out one was an old friend!). And she loves her new apartment.
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It’s time now. Feeling like screaming all the time is not good for you or your mom. It’s often the caregivers that pass before the one being cared for. It’s time for you to be the daughter again. No the caregiver. I know it’s hard. Also you should talk with the doctor about what is the best level of care for your mom.
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It’s time now. Feeling like screaming all the time is not good for you or your mom. It’s often the caregivers that pass before the one being cared for. It’s time for you to be the daughter again. No the caregiver. I know it’s hard. Also you should talk with the doctor about what is the best level of care for your mom.
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Everybody's suggestions good here! One I might add; my friend in AL was brought from another state to be near her daughter. Bad news is that this is a very insular small town, and many of the people in the facility are from here or at least near here; they ignore my friend, don't sit with her even at meals, even ignore her completely and speak around her to each other if she is seated with them. In TWO YEARS she has only had a person sit at her table regularly twice, and one of them was pretty far along in dementia.... The same thing happens when she goes to church; no one sits with her, they let her sit alone. This town has always been this way; I and several people I know who came from elsewhere live with it - we just do stuff with others from "away". The sad part is aside from Macular Degeneration, there is really nothing wrong with my friend, and she is a fascinating person, has been all over the world and was an RN for many years. FYI all of you who may be considering placing your LO or moving them.... Thanks for all your posts; I learn so much and may soon be placing my own mom, so you are particularly helpful at this time.
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I haven't read through all the posts but I was in your position not that long ago. I have no siblings so these decisions were my sole responsibility. As my parents aged, they were still living in their home but needed help. I was there almost daily, cleaned their house, did the shopping, took them to Doctor appts, etc. my Dad passed but my Mom insisted staying in her home. I was developing health issues myself and the added stress was not helping. You find yourself always making sure you are near the phone. She fell and broke her wrist. Brought her to our home but, after 5 months, she insisted on returning to her home. Her hearing was getting worse and I could see her dementia worsening. She just refused to leave her home and my stress only increased. If you have no back up, you can't go far or for long. She then got sick, refused to go to the doctor. Ended up, again, having to call an ambulance and another hospital stay. I had to put my foot down and told her she just could not live alone anymore and brought her to live with us. I then had to sell her home, pack that up, etc. she had a living trust but we went to the attorney to make sure everything was in order and I had POA, very important! She lived with us for almost 3 years and her dementia was worsening. I had to get someone in to bath her for me a couple of times a week, at least. Again, we could not go anywhere. Caregivers can be very expensive. I was fortunate enough to find a couple of private referrals through friends and a neighbor. I have to admit, my husband was pretty patient through all this. Like you, I was exhausted, dealing with my health and just getting angry. Not so much at her but the whole situation and I started considering a facility. I started visiting some in town but, like your mother, mine was beyond the assisted living option. Truthfully, I was not impressed with some of the large places and the ratio was often one caregiver to 6-8 people! It was my eye doctor that referred me to a woman who does this as a business. I contacted her and she told me about small, residential facilities, licensed by the State, and usually only have 6-8 residents. Sorry this is so long. I ended up finding one, took her there to show her around. These places aren't cheap either and she had no insurance but she had the money from the sale of her home. I placed her there and went to visit almost every day. She had started getting up at night and there was an issue of night staff. I ended up moving her to another residential home, that had an opening, and it was much better. Eventually, my Mother, who was then 95, had to go into Hospice care. I still feel guilty about moving her but know it was a decision that had to be made. I do feel I made the best decision putting her in the smaller home. She got all her meals, they did the laundry, had 24/7 care, usually 2-3 caregivers there daily. Much better care ratio. I hope this might help you in your decision process. Best of luck.
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Hi Candlelight!
Perhaps I can best answer using my mother's words. She is 86, has Alzheimer's, and has been in a memory unit for two years. She told me years ago, "Don't feel guilty if you couldn't take care of me to the end, or if you need to go on with your own life." She had taken care of her own mother as long as she was able, so she knew so well the strain on, not only her life, but my dad's.

I would recommend that you look at all your options out there, including foster homes, which are much smaller with more of a home setting.
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