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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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About visiting - keep it irregular - visit 1 week 4 times next 2 next 3 - mix it up am/afternoon/pm - so they can't count on when you go - that means the resident is always ready - I'm going on sun this week as I rarely go then & that means she will be ready for several weeks after because of it

You can only do so much & at some time you know in your heart of hearts that the time is nearing or here - listen to that whisper - you can't help them if you are in your own grave!
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Candlelight: You may, quite likely, drop over and faint if you don't house your mother in a facility.
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Mally,
I wonder the same thing. Once they know the person doesn’t have family visitors, then the less they do. Even the supposedly good ones are there for functioning people. They get to do everything planned because they know to show up and sign themselves up if it’s an outing. It’s a resort for them.

I don’t even know why those functioning people are in A/L’s? I guess it’s because they have the money to be there for 3 squares a day and weekly cleaning and clothes washing.

I had to take my husband out of two of them because they either didn’t give him pills on time, or didn’t keep him safe when he began to fall. I brought home a bruised and bloody person from the last one.

Then I got in-home care and they come with phones attached to their ears or hands. Never without a phone. They don’t talk with him or do anything that is like being a companion. They clean up after him, take him to places I ask them to do, but since he’s a falling hazard, which gets saved first from a fall? The phone or the patient?

I prefer in-home care because they help me clean up the house. Taking care of the patient...hmmm, minimum but he does get fed.
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I agree about the AL facilities.... I show up once or twice a week as companion/friend to a lady in the local AL. She tells me they no longer assist her with much; not dressing, not staying in the next room while she showers, not checking with her to see if she is coming to functions (she had macular and can't read the flyers and some forgetfulness). The aides don't seem willing to help her with stuff, so now she doesn't ask them, asks me, or does without. What do people pay for in "Assisted" Living places?
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as someone noted above, my mom is doing MUCH better now that she is in AL. Her friends from federally-subsidized independent living are envious of her new situation -- they can't afford the lovely community in which she lives. They'll have to go to a Medicaid-funded facility when they have to move. Mom was smart enough to buy a long-term care policy when she was 62. She's now 87. It only covers 3 yrs, however.

I'd also like to echo the comment that a choice for hospice is NOT a death sentence. She will receive good care there. And I also agree with the advice to keep a close eye on your loved one even in a good AL community. My mom does not get meds quite when she is supposed to, but it hasn't become a problem yet. And the staff does not always respond quickly to calls from her "I need help" button. The community has trouble hanging on to staff, so they are currently understaffed. Elder care requires constant alertness. I live quite a ways away (an 11 hour drive) and my siblings stop by rarely.
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My Mom made the comment to 'go see what you can find, this (living alone without care overnight) is not a good idea anymore.' I asked her to simply think of how the family would feel if she fell and refused to consider moving, leaving me to feel guilty for not making her act on her own- or the fall would likely result in a broken hip, leg etc. and the pain could not be remedied with surgery but Morphine.' She made it her decision, and it's hard no matter what we do for them. It's a life journey that we just have to find the wisdom to consider our lives without them- if we have allowed anything besides their care to focus on in life! She would never want you to forfeit yourself. Maybe she will note how much happier and healthier you are, and be proud. Come and tell us how you are often.
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I agree with gladimhere. Once you start thinking about placing your LO in a home, then it's time. But, you might want to consider assisted living as a viable option if you think that Mom could possibly live alone with the help of some nursing aid, which, of course, is always extra. But, at least, that would give Mom some "say" to be independent. Depends on Mom. You know her best. You're not alone in this. Visit this site often. I have gleamed so much off of it and it just helps to know you are not alone.
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Hi Candlelight, my mom has had dementia for years and just last year her doctor suggested that I look into a memory care unit. When it got to the time where I was totally stressed out & worried about my mom living alone. She wasn't taking care of her cats any longer, started wandering over to the neighbors' houses, etc. I knew it was time.

In NY State, there are very few "beds" for Medicaid patients. My mom is not on Medicaid and has to "self pay" for at least a year before we can apply for Medicaid. I would suggest that you start looking now. I wish you the best of luck, and please keep us posted!
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Cavila, choosing hospice is not a death sentence, some graduate from hospice. It is allowing your mom the care needed to keep her comfortable. Does she have a DNR in place? She is on a feeding tube? Would she want that? I know I wouldn't and my mom didn't either. No extraordinary means to keep my mom alive, that was what she wanted. My mom passed on hospice, she had been for eight months. It was past time, she never would have wanted to live the life that Alzheimer's stole from her.
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I have been following this site for quite sometime now, and I find it so helpful because I was my mom's sole caregiver for many years until about 3 months that she had a bad fall, was hospitalized and finally I made the decision to place her in long term care at a nursing home, she suffers from Alzheimer's and Parkinson's disease, she no longer walks, speaks or eats by mouth. I am now in a very hard situation because my mom has been hospitalized 3 times since then, once to get a feeding tube, and twice with neumonia and C diff infrction. This last time she was intubated and spent 4 days in ICU, her Dr from the NH has advised me it is time to consider hospice because of how weak her body is after suffering from string bouts of neumonia and the c diff, and her lungs just not responding to meds as they should. I am so scared this is her end, and I am not sure if I should just keep her from going into hospice a little longer. I feel I am giving my mom a death sentence and just giving up on her. What should I do?
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Candle, You asked about memory care. THat is a specialized residential care that is specific to caring for residents with dementia/ALZ. The best facilities have trained/skilled caretakers that are experienced with handling those with dementia as well as "tiered" or "graduated" residential areas (dorms so to speak) where care level, activities, feeding/bathing/hygiene are geared to the resident's level and needs. In other words, those that are really "out of it" perhaps can't speak, incontinent, etc. need more assistance with day to day function get that level; while those who are still very mobile, able to toilet themselves, feed themselves, etc. with little prompting may get more stimulating activity including outings outside the facility (museums, pre-schools, art galleries, community theatre).

I recently went thru this. We started several years ago looking at AL - but mom always refused and insisted on staying at home with no help. This past spring, she had to move and following assessments, determined that memory care is what she needed and would be best for her long term needs going forward. Mom had lost her short term memory, stuck back in the 1980s, lost ability to cook, manage finances and bath regularly or do laundry.

In my experience memory care has been outstanding for her. She has been there almost 8 months and thriving (and she is one ornery, stubborn woman whom I never dreamed would do well when placed). She is in high-functioning hall -- but all the residents (general population) interact with each other most of the time; but mom's hall-mates eat, sleep, and gather in their own community space as well. Mom is 94, mobile, and still recognizes me and can do everything with prompting (though she repeats herself, wears diapers (for wetting)). Weekly she goes out with about 15 other residents to plays, schools, museums, ice-cream) and the facility is well designed so that there are no long dark hallways, the place is dedicated memory care - so all hallways lead to wide open, bright, cheery spaces. Residents have 24/7 access to go outside from several doors to beautiful garden areas with wandering paths around the facility -- but secured by fence.

This facility has enthusiastic on-site director, activity coordinator, nurse, doctor, etc. They are actively engaged with staff and there seem to be many staffers who've been working there awhile. I've witnessed them treat so many residents with respect and loving care and they seem to know how to redirect or difuse anxious behaviors. THey always have a smile and kind word to residents. Residents too seem to be living their best life.

I would look for a place close to where you are so you can visit, and go on your own a few times and sit down for a meal, a magazine and just observe for a couple hours and get a feel for the place. Ask them about some of the above. I visited some memory care where all residents were equally in the same population and you could sense the sadness with high functioning individuals having to always be with barely functioning population which seemed to lead to more depression and decline. Avoid places that are dark, have little outdoor space, or you see all the residents corralled infront of TV most of the day. Look for one with lots of activities for all levels.
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The problem with a lot of assisted living places is that they don’t understand Parkinson’s Disease. Period. They will promise you the moon and not do what the patient requires.

First, you must ask if they have dedicated med techs. How many are working in a shift for how many people?

Second, you must be there when the head nurse puts the med schedule in the computer. They will change the times unbeknownst to you. That schedule must be checked all the time.

Third, be there at different times when you know pills should be delivered. You’ll be surprised how late or early they’ll show up and we know how awful it can get for the patient when those times are not kept within a reasonable time of when due.

It might take a couple of weeks to get the staff to realize the importance of this, or they might never get there. I’ve had to take my husband out of two places because of this. The second place sent me a bill because I didn’t give them 30 days notice of leaving. Are they kidding? They had to send my husband to the hospital twice because of his sudden falling. They changed his med times and bingo, down he went. I had to bring him home again all bloody and bruised, and they had the nerve to send me a bill.

If your Mom needs extra care now, plan on using memory care. What i’ve seen is that they place the people in a main large room where two aides can keep a watchful eye on the room. They can’t leave of course, doors are locked, but there might be a bit of community going on. They dress, feed, shower, and give meds, put them to bed, etc. In other words, they are you. And you will pay big time.

Because I had to bring my husband home suddenly, I got in touch with in home care. I never thought I could go with this idea of having someone in my home, but it is working out beautifully. They become you. Even do the food shopping.

Think about trying it. Once they are trained to be you, you are free. I come and go as I please, they do it all for the loved one. Cook too. I love it!

Good luck with your decision.
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Hey guys! Look up small state licensed residential care homes in _______ (whatever your state is). I found a whole list of them, and also ALs in my state just now!
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I agree with the posters; now is the time. She has Parkinson's which requires your physical and mental strength and dementia which requires even more; I think that now would be a good time.

I think looking into your options now will help you a lot. Also what could take the pressure off you is looking into respite care, which she you may immediately qualify for so you can take a break and regroup; focus on what your next steps should be.
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I had the same thoughts before Mom went into a nursing home. You don't want to put your mother in a nursing home but there does come a time that you have to start thinking of your health. People around me could tell that I was at my wits end. I loved my Mom dearly and though I could do it all but I did crash and burn. I think the best advice that I received from co workers was to at least go and look at what is available. I insisted that I would not put Mom in a home, my thoughts were of the days that my Great grandfather was in a home. Of course that is not what it is like in this day and age. I was quite surprised at what I found. We placed Mom in the first home and did later move her due to the doctor. I found such a huge difference in the two homes that Mom was in, Both very nice, but the first one had about 40 residents. The staff was very nice and I became close to several of the residents and staff members. When we ran into the issue with the Doctor and we decided to move Mom I found another home that was brand new, well actually it was the first one that we visited but it was not open at the time we had to place mom. Although the first home had a very nice appearance it was day and night as to the care that was given. The second home, (Twin Rivers) only had the capacity for 19 residents in memory care. The individual care that the residents received was unbelievable!!! It was move of a group home environment. the other residents really watched after each other and viewed it as their home. Being brand new it was spotless and no smells at all. They had wonderful activities, the lady that ran this area was fantastic and gave so much love to all of them. I'm so glad that we made the decision to move Mom. I had no idea that you would find such differences in Nursing Homes. the cost was even a little cheaper at the New Nursing Home. Some charge per item and per level of care, Twin Rivers was a flat rate. It was quit and when someone has Alzheimer's it seems that they really like quiet at least my Mom did. I really think that if you just take the step to go visit and really look at a few your mind will be at ease. I hope this helps, I know this is very hard for you.
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You have answered your own question...The time is now. You are already past the point where you can offer a healing environment to yourself and to your loved one. I reached that point and knew that if i did not place Mom in a home, I would do much more emotional and spiritual harm to her, and to myself and my husband. Once you reach that point - of expressing the emotional burn out - that is the point where you need to take action. Good luck and many blessings to you.
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I feel for you as this is one of the most difficult decisions I made in my life - helping my Mom move to AL. I'm blessed, because my Mom didn't want to leave my home, but knew she needed to consider my stress & exhaustion. She went with me to look at several AL places because I wanted & needed her input. We decided on one & she went on respite one day over the weekend. Good thing, because she changed her mind. I kept looking & found another that was only 3 miles from my work. I'm 64 & close to retirement, but my Mom at 93 is in good health & could potentially live to 100. She has suffered from Vascular Dementia, having many falls & hospital visits. My husband started having health issues & if you are married, you have to consider your spouse. I could not jeopardize our marriage over my Mom. AL's are not perfect, but after 3 months of Mom living in one, she has made a complete turnaround. Her health has improved, her memory has improved, her mood is better & she is finding interest again in the hobbies she loves. She has found community & she feels useful & needed with the other residents. This did not happen overnight, she was very sad for about 2 months. Stay very hands on - find a place where she moves into an apt with her own things. Mom's door locks & only employees can gain access. I listen carefully to my Mom & go in frequently at different times. We have had some issues, but I immediately go to bat for my Mom & meet with the Director stating our complaint(s). They have been wonderful to listen & work with us. I'm so thankful for this place & how it has brought me some rest & peace. They take care of meds, meals, bathing, cleaning apt. & other helps are available if needed. They are not cheap however. There are no perfect places or perfect people. Do your homework & help your Mom, but DO NOT feel guilty. This is the most exhausting & thankless role I've ever played. I truly love my Mom & have cried many tears over her, but Lord willing I will continue on with my life for many years to come. She would want me to enjoy & be healthy the same as her. Best wishes & big hugs in your journey.
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Candlelight — Sounds like you’re ready to place Mom and you’re looking for confirmation. You have our support. It’s never easy, and all this elder stuff is fraught with “what if’s.” And it’s very emotional. That said, Mom needs to be safe. And you need peace of mind.
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Donna7874(btw, I'm really a Donna, too, deb was my dad) how was your mom able to be in rehab for several months? I didn't think Medicare paid for it for that long
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Candlelight, I was in the same boat as you. However, my own mother had balance and gait issues, as well as the early stages of dementia. The last hospital she was at suggested that she go to a rehabilitation facility on what was originally supposed to be on a short term basis. However, after having been at the facility for several months, it was determined by the nursing team that my mom needed 24/7 care and supervision. It was a difficult and sad decision to make, but one I was lucky enough to NOT have to make alone. My advice is to seek out the opinion of medical professionals to determine when "it's time". (It sounds like that time has come for you, if you are stressed to the point of being burnt out, always angry, and ready to scream.) I was fortunate that one of said professionals was a friend from graduate school, who worked in an EXCELLENT facility. This made the decision, and the transition that much easier for myself and for mom. Hope this helps. D-
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Candlelight: You have gone above and beyond the call of duty in regard to your mother's care. Any time you feel ill yourself is the time to place your mother in a facility because the medical demands are more than a non-medically trained person can provide.
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We all reach that point at different paces. But, if you're asking "is it time" and feeling the things you wrote - IT'S TIME!
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I think you are answering your own question. It is time. Please don't wait until your mom needs the highest level of care. The sooner, the better.

In your update post, it sounds like your mom could do Assisted Living. All of those things you mention are within the scope of care AL provides: med management, bathing, dressing, toileting, help with dining. The community will do an assessment of your mom's care needs. If possible, try to find an AL, rather than a nursing home. The lifestyle is sooo much more lively. If your mom is in the early stages of dementia, she won't need special memory care, but because that may be a future possibility, try to find a community that has memory care, too.

Mom has long-term care insurance?! By all means, move ASAP.
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I think your first clue as to whether Mom is safe or not is to ask the question of....is she SAFE at home? Safety is the number one reason that people need to be "watched after." We moved my Mom at 90, with dementia, because she would get lost while driving. She wouldn't remember that we were coming to take her out, and would leave the condo. She was getting paranoid about the people who lived in her condo building. And, lastly and more importantly, she could not keep track of the meds that she had to take...when,..what...how many...what time....everything. Does your Mom still drive? Can she take her meds on time and when she should. Does she leave the micro going and forget about it? Just little things.

I began to think that it was time, because my Mom would forget that we were coming to visit and went grocery shopping instead. When I found that she'd been taking the wrong meds at the wrong time, I thought it was time for further assistance. Little things.

She was lucid enough to know that we wanted to move her to a facility that would help her get through her day without anything happening to her. It was a struggle to convince her...don't get me wrong. Fortunately, tho, Mom believed me and said yes to moving. Initially, we started with assisted living just with dispensing her medications. She has been at her facility (which she says she loves and doesn't want to move away from) for four years now. And, at this time, she not only has her meds dispensed to her; but her laundry is done every two weeks; a shower is given to her once a week; has assistance to and from her meals in the dining room every day; and finally, potty checks several times a day. I cannot begin to tell you just how much of a relief it is to have her in assisted living. She falls a lot (she's 94), and has been taken to the hospital many, many times. But, it is what it is, and I feel all the better for her and her safety.

Hang in there. I know you will make the right decision. Those of us who have loved ones in facilities KNOW that they, too, have made the right decision.
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I've been where you are. It's a very hard decision. Why not do a trial run? Try respite, which is a temporary nursing home stay (from 3 to 30 days). It is covered by Medicaid. That way, you've taken the first step and gotten an idea of what it would be like, without the "finality" of it all. Also remember that if and once you place your mom, you can always move her to another facility or bring her home if you change your mind or if it doesn't work out.

Start touring nursing homes now and ask the admissions person about respite.
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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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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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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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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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