Hi, it's me, the woman whose mom rotates with my brothers and their wives on a monthly basis.
Just got the word on Saturday that one of my sisters-in-law will be moving to FL (my brother will be here) for the winter months. She will not be able to watch mom at all and she said to me that my mom is in last stage and not eating good and she doesn't want to see her this way (not the reason why she is going).
Mom is like this: she walks gingerly and slowly, doesn't eat alot but does eat, especially ice cream, cannot communicate at all. Can say my name and call me and make statements like "I'm cold" "look at the cars" - statements like that. If you ask her a question, she will shrug her shoulders like "I don't know." I thought last stage was when they don't walk or eat and are bedridden. Am I wrong? She still goes out to eat with us.
Now I am worried because I know my other brother will not be able to handle her permanently and I don't blame him.
My brother is going to see if his step daughter will take over (she has three little kids) - and she lives in Ronkonkoma in L.I. which is one hour from me (Queens) - If she moves there, I will have a problem if mom goes to a hospital out there if there is an emergency.
I am a wreck and I do know that I cannot call 911 for no reason. The doctor told me to call her when mom cannot eat. I am going to weigh her on Saturday and see if she lost weight.
I feel responsible for her and I know if she is with my brothers they should be the ones responsible - I have a lot of guilt as the oldest who my dad gave me POA.
Also, I know if she is not in the hospital and needs to go into a nursing home, the first thing is to get a PRI from a nurse who would go to the house.
Then I would bring it to the nursing home (which luckily I have one right on my corner and I can pay a few months from mom's money which makes them happy). How does she get there? Does an ambulance bring her there? How am I going to drop her off and walk out?????
No one in my family ever ever went into a nursing home. It will be awful.
So I am torn with guilt if something happens to her at home with brothers.
I really prefer her being with family - help me understand the process of nursing home and how many days it would take after I get the PRI.
This is still all up in the air but I know it's coming fast.
Sorry for the long post. Hope you understand what I am up against.
Never Fear - your Alz's pals are here I'm new to walking this road myself, so will leave the details to the other experts. Just wanted to say hi and hang in there! My sister and I are moving our parents to an independent living / assisted living facility this very week.
Our mom is okay at this point - DSD (dear stepdad) has a form of dementia and had a mini stroke this summer. Know I'm thinking of you and sending you a towel to grab hold of
Dear, dear, Maryann. Please banish the idea "it will be awful" from your thoughts and vocabulary! My Mom was in an excellent NH on Long Island! It was Cold Spring Hills in Westbury. My brother lives in Farmngdale and when I go to see him, I take the Ronkonkoma Line train to his station from the airport.
In our experience, nursing homes on Long Island are excellent! There is a lot of competition between them, and they try hard to get and keep residents. My Mom got the best of loving care.
She was taken there by ambulance after a hip operation, but once you have filled in the paperwork and they have a bed available, anyone can drive her there; it does not have to be a hospital and you don't need a doctor's opinion. If you have money for several months that is excellent, because once it is gone they will help you get her on Medicaid as in my Mom's case.
Remember, those places are there to care for people who are handicapped, old, forgetful, alone or helpless, or all of the above. The nurses are trained to cope with Dementia pateints as well as others. Do they have a bed available in that NH near your home? That would be great - because some of them have waiting lists.
End stage can mean different things to different people. In Mom's case it meant she was no longer processing food or drugs, was losing weight, and her memory going downhill fast. However she lived 9 months after that diagnosis. Others refer only to the last few days when they say end stage.
I wish you luck, optimism and faith that things will go well for your Mom.
I think preparing to move a loved one to a NH is actually much worse than them actually being there. My mom is an Independent Living facility at the moment..has been for a year and a half and she is watched closely by caring staff. It has been much better for her to be there with them than here with me. They know so much more and are able to handle it better. As she progresses in her disease we will move her to the AL next door. I see her daily and know what is going on..so it is good that you have one so close to you. They treat me as a welcome face every time they see me. They treat me as family.
I take my mom out 4 times a week and the other 3 days I go up there to make sure she is fine and dressed and then take her for a walk around the place...maybe we just sit and have a cup of coffee.
These homes are not the horror stories of days gone by.
i totally agree with the others. sometimes there is a 1st for everything. how much can you handle on your shoulders. i often think if it was me who had dementia i would not want my kids taking care of me. i never thought my mom would go into a nh because she despised them. we had to put my grandmother in one and i promised my mom i would never do that to her. but we had no choice and although i have regrets there is no way my family could have taken care of her. the nh turned out to be fine for taking care of her.
I am going to throw in much the same sentiment. Nursing homes are not the horror stories of the past. Mom and Dad are actually in a locked ALZ unit. They moved there from AL and I took them in my car. Here in NC you have to have a FL2 for any resident in a care facility but that's nothing more than a simple form that the doctor's fills out and sends with the patient stating their level of care from AL to skilled nursing.
We tried keeping Mom and Dad at home and it just didn't work. There was lots of stress, fear, anxiety, and distress on the part of the sisters when we had to make the first move to AL and the last move to the locked unit. Meg is right, the preparation of ourselves and our loved ones is worse than them being there. I actually think that the prospects are worse on us than them.
Mom did have a difficult time adjusting to AL. She absolutely mourned her home for a while. Then she progrssed down the slipper slope and kept etting worse. At this point she is happier than she was at home. She love the staff. She had adopted one of the younger girls as her grand daughter. She calls a resident and another staff member by the name of two individuals she loved in her past. She is always busy. The only regret is that we didn't move them sooner.
Now that Mom and Dad have been in a care facility for 2 years I know one thing. I can't provide all the assistance that they get now. I could get them in the tub and make sure they had three meals and their meds. I might even get them out once in a while. But I couldn't provide the socialization and entertainment they are exposed to now. I don't have a portable X-ray or a nurse on duty. I am not fresh faced 24/7/365. My parents now have so much more than i could offer them.
Some wise lady here told me when I was struggling with the same situation you are MaryAnn, that it is time to move your loved one when you are ready because your loved one has been ready. We do fear it more than they do.
Your Mom sounds like she is at the stage Mom is now. Mom's spring has gone out of her step. She can not make a complete sentence or more than three words. She shrugs her shoulders and says I don't know or a simple yes to any question. She is eating less than she was but loves the ice cream and her orangeaids. There are days she doesn't who I am but other days she does. I don't consider her in the last stage. I reserve that for those that are no eating, processing food, or up walking around. But we don't know when our loved one's last stage will be. For now, I am just glad Mom is with me and smiling
Do your leg work and check out all the homes you can find. Visit them more than once and at different times of the day. Just walk around a while and see what you see. When you talk to them ask what the staff turn over ratio is and what the average time of emplloyment. Heath care workers that are caring and find a caring facility to be in will say. Talk to some of the personnel and see how they interact with residents. Is the staff happy or grumbling. You will find the right fit for you MOm
I will keep you all in my thoughts and prayers that something works out for you.
MaryPar - I'm in the exact same place right now. DH is also not speaking much, and appears to be starting to have trouble eating (using fingers, breaking up food instead of eating it). He is becoming incontinent, and doesn't understand speech, needs help getting dressed now, is sundowning and walking in circles constantly, etc. We had the nursing home assessment last week (caseworker evaluation required in addition to doctor's assessment). The caseworker said that he was nursing home ready. In fact, both she and the doctor said that we kept him home a lot longer than most families.
We already knew which nursing home we wanted, so at least we don't have to visit them. I called, and they sent an application. I'll bring it in to them this week. We'll be going on a wait list, since DH needs their AD locked wing. Unfortunately, they won't tell me how long the wait list is so I don't know if he'll be placed quickly or if it will take many more months. If I were being honest with myself, I'm hoping it's very quick at this point.
My kid (still in high school) and I will cry the day we drive him there. We always knew this day was coming, and it's hard to believe that it's here. We will wonder if he knows what's going on, or feels that we are abandoning him. I tell myself that DH had agreed that placement would occur when his illness had progressed to this point.
Our family will slowly start to live again, after seven years of being AD caregivers. We will still be caregivers, visiting him nearly every day. Our new job will be to make sure that his care is as good as we believe it will be. We know that the workers have more expertise and patience than we do.
DH's life will expand, and he will enjoy being around other people and having more activities. His life was slowly narrowing with us, since we were getting to the point where we couldn't take him to restaurants, stores, school events, etc. due to incontinence and other issues.
Our neurologist confirmed that he is nursing home ready, but warned us that many AD patients have a big drop-off when placed in a nursing home. He wanted us to be prepared for what is going to happen, as we continue down this terrible road.
I hope the NH tells us what to pack for him, and how to do this...
Thank you for all your responses.
I wanted to ask about the nursing home application: I understand there is a way that the POA (me) has to sign it so as not to be responsible personally for any future bills. Can anyone give me an idea on how to sign? Would it be my name with POA acting as agent?? I know you have to be careful, but any ideas would be helpful.
Also, I thought only a PRI was needed for entry to the nursing home. Not a caseworker report. The nursing home I want is right on my block - no better one for me as I can go anytime at all day or night, rain or shine. Don't have to worry about traveling by car.
I will freak out if there is a wait list - when mom is ready to go there, my sister in law will not be able to watch her extra months.
The nursing home told me in December that there it would be quick as I am paying with mom's money for a few months. Hope that is right.
Do you think I should go back there and tell them it's getting close?? But I don't know exactly when and if...
Each state will have their own process for this. You should definitely call the NH and ask what they need. They can tell you if they currently have a wait-list or not. I was surprised when I learned that in our state, I'd have to have an assessment done by a government agency before I could even get DH on a waiting list.
There was a stack of forms that were required just to get the assessment. It took me a few weeks just to get the doctor to complete the medical form and to gather the rest of the information. I was a nervous wreck about the assessment, but the caseworker was very nice.
To get on the waiting list, my next step is to provide the caseworker's letter certifying NH readiness, with an application that includes financial and medical information. The NH told me that their medical staff will then do their own assessment before putting DH on their waiting list (they want to make sure that their facility is appropriate for him).
I expect that we will be self-paying for care for at least a little while. The NH application says that it doesn't matter if someone will self-pay or be paying through Medicaid. They ask for a lot of financial information. My elder lawyer has warned that the person's finances and contribution are fixed as of the date of admission so if you have any financial questions, get them answered before she is admitted!
You might also ask her doctor for help with the process. I understand that (again, at least in our state), someone can jump to the head of a wait-list if they are being released to a NH from a 3-day stay in a hospital.
When my Mother was admitted to a nursing home in another state a few years ago, all she needed was a checkbook and a doctor's recommendation that she needed nursing care.
It is my understanding that you will sign her name instead of your own name, and then write "BY (your name), POA."
Oh my that is awful to wait so long. The NH in NY told me all I needed was a PRI and she would get in. I hope they weren't pulling my leg - I hope it doesn't take a long time and a wait list. My mom may not make it that long - and her caregiver's by that time will be at their wit's end.
I didn't think they would ask for financials if you are paying from her own money. I thought that is only if you are going on medicaid. Why should they care about financials??? The NH is not Medicaid.
This is very depressing. I live in NY and the nursing home is in Queens. Where are you from?
Thanks for your help,
maryann (who is really upset and sick right now......) Yikes.
I'm in PA. I think the NH asks for financial information since they can't throw anyone out if private-pay runs out. I am checking with an elder lawyer now for each step of our application process. It's expensive, but it might be more costly to our family if I wasn't getting advice.
I recommend getting the NH's application, and talking to them about what paperwork they're going to need. I was a bigger bundle of nerves a month ago when I started this process. The stress is gradually becoming almost manageable, although I'm still trying not to think about the day I have to bring him to the NH.
I cannot speak with authority about nursing homes, as we did not go there. But I can speak of "end stage".
When we moved daddy from his duplex to ours, he walked here. A distance of about 50 yards. It took him nearly an hour to navigate it, but I let him walk as I knew the time was drawing near that he wouldn't be able to. His gait was a 3" shuffle, and he fell a lot. That was May 14 of this year. By July 1, he was walking (shuffling) only from the bed to the wheelchair. By August 1, there was no ability to even hold his own weight on his feet. He was picked up and transported to the chair.
As far as food goes, that was a tough one for me. I kept spooning food into his mouth until the last 3 days. If it had been up to him, he would not have eaten after about the 15th of July. We were down to yogurt and applesauce the last 2 weeks.
He dropped weight like crazy. When he died, he weighed about 125 lbs, down from his 160 normal weight. The weight loss was gradual over the last year, with the last 10 lbs being the last 2 weeks.
By June, he was not "talking". He could answer with "uh huh" or shake his head "no". A couple of times, he managed "I love you", but mostly I talked and he just looked at me. The verbal skills were totally gone a week before he died.
It sounds like your mom is on a downhill journey, but only God knows how long. Some folks stay in daddy's end stage for years. We were blessed with his pain ending in a short amount of time.
I will lift you up in prayer, MaryAnn. I am proud of you for making the move with her. You have more courage than I did, and you ARE doing the right thing.
Thank you all, wanted you to know I read all the messages and appreciate every word.
I just worry about the transition and logistics and of course mom being in a nursing home - like I said, I am not sure when, and do know it will be.
I am a nurse that works in dementia care in a nursing home. I want to tell you that feeling guilty and feeling worried and stressed are all normal feelings that I think all families go through when deciding to put there loved one in a nursing home. I have done some admissions that were very heartbreaking, where family would break down and cry and tell me how guilty they felt. Nobody expects this, we love our mom, our dad our husband and deepdown we feel guilty about not being able to care for them. We never expect that it would come to this point. But also to remember that out of love, we want what is best for everyone involved. Deciding to put someone in a nursing home is usually because things aren't working well the way they are and out of love, we make that decision. The beginning is the toughest and it gets better from there. We have a locked dementia care unit. So many families come in with those feelings and then months later or sooner they tell me how happy they are with the way things are going. Their loved one is settled, they feel more relaxed and reassured that their loved on is getting quality care in a safe place. They feel less stressed and are able to spend better quality time with their loved one. In our facility, families are an important part of the care. They are encouraged to be apart of the care planning, they have others to talk to and ask questions whether it is other families or with the health care team. Residents often do well in our facility once they become settled. They get into their routine of things. Whatever activities they enjoy we ensure they have access to them. The environment is specially set up to meet their needs and to allow them to live as independently as they can. I know this is a freightening time and the family only wants what is best. I don't know your family or the whole situation and I certainly can't tell what it is best for you. anyways good luck with your decision. Ask lots of questions, staff in health care facilities are usually welcoming of families being an active part of their loved ones lives. As far as being in the "end stages"...end stage is not the same for everyone. It isn't uncommon to have decreased appetite. sometimes the medications they are on can cause that, sometimes infection like urinary tract infection. Sometimes it can be stress too. I don't like the term "end stage", they go when they are ready to go. It isn't the same for everyone. I had a very active fellow that just all of a sudden decided it was his time and went in his sleep. We have a lady who has had decreased appetite with some weight loss for quite awhile, we do what we can, we provide her with her favorite foods and we sit with her and eat with her, give her higher calorie meals, that doesn't make her end stage. She is still doing quite well, we just need to encourage her a bit more, not force her, but encourage her. Anyways good luck with your decisions. I am sure whatever the decision is, it will be for the best for your mom and for your family. A decision isn't set in stone either, if it truly doesn't work there are other options.
also wanted to say that many of our residents in our unit actually end up gaining weight from their admissions I would say over 90% of the time. we never force feed but I think it is the consistent routine of things. We monitor weight and have a dietician that carefully plans out nutritious meals for them. So when they are admitted and family reports they have had decreased appetite and weight loss alot of the times that improves in the facility. I think it has to do with the fact that residents once settled feel less stressed in the specially designed environment. Meals and snacks are consistent and tailored to their needs. If they eat less, then usually they get higher calorie. If they end up to the point where they won't eat at all, that is their choice and we don't force it.