I have been taking care of Mom in her small 1 bedroom condo in Florida for the last three and a half years. I have my own place in New York where my children still reside and I miss them dearly. My mom can no longer travel with me as she used to.

Her dementia has become pretty severe she's losing control of her bladder and bowels she will yell and not make any sense she needs to be coaxed to eat and have her food cut up. I am seriously at the my end of my rope . I desperately need to go home for a few weeks to take care of my place and be around my two children they are grown but they are my everything.

My question is do I need a doctor's referral to find a place for her for a few weeks as I can get some much much much needed change of scenery. Even if she was able to travel our last trip in May of 2018 for two weeks ended up to be a catastrophe. It was more work for me than it was worth. Mom is 84 and has been diagnosed with dementia in the last 5 years. I am 64 and I am currently on disability for severe arthritis and I have since put on 20 lb which is insane considering I can barely walk. As it is I'm just rambling on because I need someone to speak with desperately when I speak with my children about this they tell me it's time for her to go into a nursing home that breaks my heart but I feel like I am dying here everyday is the same there is no life for me here except cooking and cleaning up after her. It feels like I have a set of twin toddlers but they're not growing and learning things it's the reverse and it's very exhausting.

I already mourned my mother about two years ago when she became unable to complete a sentence or understand a simple request. I'm starting to become resentful because I feel like I'm taking care of a total stranger and there's no hope for recovery. Perhaps my children are right and I should look into putting her into some kind of memory care facility. Please excuse my rambling I just needed to vent. These last two weeks have been extremely difficult and I find myself crying everyday. I fear that I may be falling into a depression. Even while I'm asleep I'm jolted awake by hearing her scream and yell and when I check on her she's sleeping so she's entering my dreams.

And don't bother to suggest that I request family members to assist BECAUSE THEY DON'T. My children will come down here every few months and give me much needed relief from the unbearable redundant monotony. Just writing this I realize I need to go see a therapist soon but that would entail finding someone to come in to watch her once or twice a week for a few hours I also need to start attending Weight Watchers. I don't like how I have become emotionally and physically . Thanks for listening

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Hey 1954 ~

Went thru the EXACT SAME THING 9mo ago! Dad's Lewy Body dementia was EXHAUSTING!!!

It got so bad that at one time I was walking w/ my Boyfriend in the winter when dad had fallen asleep for 20mins and I asked him "Am I still alive or is this a nightmare?"

The toddler analogy you refereed to is spot on ~ It NEVER EVER EVER stopped.
I couldn't turn my back on him w/o something horrible happening.

I did finally put him in respite for me to get some rest and he passed away the second day. I knew I was just keeping him alive from hour to hour towards the end ~ And I have a disability also ~ Amputee from cancer ~ so it was EXHAUSTING!!! So I can relate.

Do yourself a kindness and put her in care where they are trained and have the manpower to help w/ this phase of her life. I waited way too long.

Besides that ~ The memories of his last months still haunt me daily ~
I should've,
Why didn't I,
Maybe if I could've ~~~

You're gonna be ok ~ Much love J
Helpful Answer (11)
Nightmare1954 Feb 2019
Dear I'm so tired. I also waited too long 2 weeks ago mom was diagnosed with terminal cancer on top of her severe dementia and it has just now been put in hospice care at home . Yes , I'm still here in Florida taking care of her and I feel the fool because my partner of 12 Years who was waiting for me up north passed suddenly from a blood clot in the lung. I am beside myself with grief and regret that I left him alone to care for my mother and now he's gone and I feel my future is as well. If someone is reading this don't wait too long. Organize your priorities
I'm not sure whether or not you need a doctor's referral for a short respite stay, I think that may depend on where you live and whether or not you have the money to private pay, I was able to send my mom to a nursing home for respite twice without a referral but they have since tightened up the requirements. When I finally hit the wall I sent my mom to a nursing home for crisis respite and I never brought her home again, after a couple of weeks without her I knew I couldn't do it on my own anymore and was terrified that she might have to come home again before I found her a place.
Helpful Answer (9)

“You fear you may be going into depression,” ya think....?

You’re on disability, you can barely walk, you’ve been uprooted from your home, you miss your children, you get no help or support, your mother can no longer interact with you AND you’re a full time caretaker of a virtual stranger!

If you were not depressed it would indicate to me that you’re just a machine, which you are not. You need something positive in your life to keep going because you are HUMAN! You have needs of you’re own and the top of the list is some kind of JOY to counter the burden of your life.

I cant answer your question but I say do everything in your power to make a change before your own body breaks down more than just gaining weight!

i can already tell you have symptoms of ptsd hearing her cry out when she’s sleeping.

If now is not the time to move her to a care home when will it be? It sounds as if she doesn’t even recognize you. Why are you killing yourself? Is this what she would’ve wanted when she was clearheaded? For you to sacrifice yourself while she is practically in vegetative state?

i wonder if it would be easier for you to place her in your home state so you can have easier access to her.

just wondering, because I have no experience here except for being a full time caretaker and my mom is fully cognitive and can still do a lot for herself. As a matter of fact, that is what I require of her as I have had no medical or geriatric training and I only have the strength of a gnat so I won’t be much help when she becomes incapacitated. Actually, I can’t even get her to do anything without a struggle. Not motivated by me at all.

Thats my world and I complain. Can you believe it? My life must sound like a dream to you. Go get yours back...RUN!

Good luck!
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I am amazed at all you have done for your LO, for so long. Too often, we take care of others, but not of ourselves.

We don't know where you are in Florida. But the Council on Aging locally can advise you on your options and also provide referrals. At least they do here in Indiana.

Try contacting them.

I agree that you should look in your home state as well.

It is time to get back your life while you still can.
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I I want to thank everyone for their support it was greatly appreciated and needed . I tend to be a nurturer by Nature being the eldest but this had just gotten to be so overwhelming for me with no one here for support I found a lot of strength with the replies I've received. Much love thank you. We will be going to her doctor on Wednesday she was just there 2 weeks ago and I will speak to him about finding a place that I can take a break and think things out.
Helpful Answer (7)
Smcowart Sep 2018
Would you ever consider moving your mom to NY? If she were in a nursing home nearby, you could visit as often as you like. Moving her into a nursing home is probably the best thing you could do for both of you.
You do not need a Doctors note or referral.
But if you are placing her in a facility, rather than having someone come in to care for her I am sure you will also need a note from the doctor that she is in good health as well as current prescription medications. And you will need them in the original prescription bottles with current refill info. You will also need a TB skin test (unless she has tested positive in the past)

May I also suggest that while she is in respite that you choose a place that she will transition to. She may do very well and you need your life back. I am sure if you two spoke about this 30 years ago she probably would not have wanted you to give up your life, your family to care for her.
Helpful Answer (7)

It probably isn't necessary but it couldn't hurt - this tells the facility what her problems are but even more important it shows them that she see a dr regularly

HOWEVER .. You should listen to your kids - this is your cry for help & we all have been there is some way or another - when she is invading your dreams then your own subconcious is telling you that now is the time

On top of that I very highly recommend that you bring her to near your home - don't listen about the weather being nicer in Fla. because unless she goes outside often then she could be anywhere - the NH is always the same temperature inside year round - my mom is now 4 minutes away [used to be 40 min] & that is fantastic - I see her more often but for shorter time periods as her dementia is also severe

If you found somewhere close enough to walk on nice days that would get your exercise upped too & kill 2 birds with 1 stone - when you visit often & at different times of the day then they don't know when/if you will come so she will be optimized all the time -

Time to take back your life for you & it sounds like she needs more help than you can do physically anymore - congrats for your effort but it looks like it is time for the professionals to come on board
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Dear Nightmare,
I am more worried about you at this point than I am your mom. You sound like you are at the breaking point and you need to do something NOW!
I remember feeling that way when I could no longer take it. I have lost hair from stress, gotten diverticulitis, insomnia, and felt like I was mentally cracking. If she didn't leave when she did, I don't know what my body would have done next.

Can she get to her doctor? I'm sure you'll get a referral.
If worst comes to worst, drop her at the Emergency Room and say she lives alone but you have been coming in to care for her. Tell them you need to go back home and there is no one is no one else to care for her. They will apply for emergency placement and start the application process for Medicaid.

Like Popeye said, "It's all I can stands and I can't stands no more."

Definitely seek therapy for yourself when you get back home. This doesn't go away over night.
Helpful Answer (5)

MEDICARE only pays 20 days for skilled nursing facility but after 4 days in the hospital and is along the lines of rehab. "For days 21 to 100 of your stay, you pay $167.50 per day in 2018 as coinsurance. At day 101 and beyond, you are usually responsible for all expenses associated with your nursing home care."

Medicare Part A covers the hospitalization; Medicare Part B does not pay for custodial care (feeding, bathing, toileting, etc).

If you get her on hospice, which needs a doctor's order, you can have 5 days of respite care (or whatever the facility dictates).

IF she is on MEDICAID -- you can put her in a nursing home and it sounds like you need to do that permanently since you have health issues yourself and caregiving gets much, much worse as she ages. See her doctor to get that order. If she is not on Medicaid see your eldercare attorney about getting her Medicaid prepared.
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donkeehote Sep 2018
Medicaid is great long as they qualify and they go back 7 years due to income history to determine if they cheated the system
Hi Nightmare,
I am so sorry for what you are going through. It does sound like you need a break. My expérience is that you do NOT need a referral from a doctor. But, if you want her care to continue with her current doctor you may want to ask him/her which nursing homes he/she actually visits. I was lucky to get a referral from my mother's MD. And, for the most part, I did find that he visited reasonably regularly. He had other patients in the same facility.

When you place someone in a nursing home - even for respite care - they will require a lot of information. My expérience is that they also required payment in full for the respite stay. My situation was different than yours because I lived in the same city as my parents. Therefore, I was able to visit daily. This could be a good opportunity for you to "try out" nursing home care.

I guess my advice to you is to discuss your concerns with your mom's MD. I find that doctors who care for geriatric patients do have some valuable insights. I always looked for nursing homes that were near major hospitals so that I knew where my mother would be taken in the event of an emergency.

One thought occurs to me. If you would be happier to return home on a permanent basis, have you considered moving your mother near your home. I did find that my parents "did not know where they were anymore" after a period of time.

I have been through all of the things that you described. Understand, that the burden always seems to fall on the shoulders of one family member. The others can manufacture all kinds of excuses for why they can't do more. My parents have both passed and now I am left with many feelings of ressentment towards my brother and his children who rarely managed to visit my mother. I am trying very hard to forgive this because it is not healthy, it does not accomplish anything, and it is not what my faith teaches me to do. My mother has been gone for over a year, and I still have dreams of her calling me for help. I still remember her facial expressions when she was in pain and when she was angry because I could not help her.

You have been good and dévoted to your mother. Acknowledge that you need and deserve help. Reach out to others who may be able to provide you with good information. That will give you some peace of mind. I know that you are exhausted. Find the help that you need as soon as you can. You will be able to make better long - term décisions after you get a little rest.

Many of us have been where you are and understand how difficult it is. I hope my words have been helpful.
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