Follow
Share

Since I have joined this group a lot has happened. My Mother's health continues to decline at 90 years old. She doesn't care about eating or drinking most of the time - then she forgets, due to Dementia, to eating fairly well. Her mind is at it's worst but she hasn't been hateful or hurtful for months now. She is very sweet and a favorite of all the nurses. Last Tuesday I had my husband to check on my Mom since I couldn't get her to answer the phone while I was in town. He found her on the floor and a burner on the cook stove left on. (My husband shut the gas valve off from the stove since then) We do not know if she blacked out again or not. A RN had just been there and told me Mother was very, very tired and said she was going to lay down. It wouldn't be odd at all for her to just lie down on the floor if she was that tired. Since a burner was on, Hospice had to report it to APS. They are to call me and set up a visit. I don't know what to expect. Can someone help me understand what their purpose is and what we are up against? All I hear is they get involved when they believe a parent is being neglected. Also, Hospice care told me there had been changes in the law and I would lose care for my Mom in September because patients now must be bedridden or cannot speak. This will be devastating to lose their care. Does anyone know anything about the new laws of Hospice? I know the time in nearing that I will face placing her in a NH. I just need advice about APS and new Hospice laws. I'm so concerned.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Thank you vstefans. I appreciate your words and the courtesy/respect/compassion you shared to me. As of right now, my Mom was able to go to town with a friend this weekend, ate a small lunch and shopped in a grocery and department store. We were all amazed. She was worn out and of course her mind wasn't working well at all. Since I can't depend on the things she tells me, I intend on speaking to her friend, who I have known all of my life, just to see how Mother really did. We have not received any contact from APS since they visited. I was told they would send a letter just to close the file because nothing was done in 72 hours.

You're right that my Mom's wish has to be die at home. She has 1 bad bedsore, 1 we caught in time is in now healed but another this weekend that seems to be more of a blister behind a knee. The wound care doctor will see it Monday. Her skin is so thin that I believe it simply came from her heavy denim jeans. The nurse that visited Sunday seemed to believe so also. Hospice is to stop their services in Oct or Nov unless the doctor gives a diagonals of congestive heart failure. Hospice has suggested Home Health in their town since they report to them. They would be aware if my Mom's condition was getting worse and step back in and is possible she could keep one of her nurses.

I have been checking on our local NH. My Mom tells me that she will do whatever I think is best even if she disagrees so that is helping me. Should my family all agrees that it is the best thing for her, as bad as I do not want her to be there because I know it will cause a rapid decline of health, depression and probably her death, I will do what is best for her protection. I am gradually coming to terms with this while considering an agency to stay with her or even adding a room onto my house for her to live in. Thank you again for taking the time.
Helpful Answer (2)
Report

Meonly, you care very much and are also trying very hard to respect your mother's wishes. But, she really, really can't be left alone even if she says she wants to be left alone. That's all people are saying. Pam is likely correct even if it seems harsh. APS probably understands but they can't consider it OK for someone in that bad a shape to be left on their own...the incident you describe, even without gas being a factor could have led to a house fire and her just dying there on the floor alone... There comes a time when people need 24/7 supervision. Maybe she could come "just for a visit" at your house instead?

I used to wonder if that was what my mom wanted, to die at home, because she would talk about going back home as soon as she could walk, though walking was NOT the biggest problem; and she threw out three different people who could have helped arrange home care. After a while, after things went from bad to worse, I realized that wasn't it at all, she just wasn't thinking straight. She did not understand that what she wished for - her old independence - was no longer possible.

Dceeeee is right - hang around - BTW all home health is not hospice, but it looks like any kind of help at home is getting harder to find or qualify for as the system is getting overhwelmed by the numbers or people who need it.
Helpful Answer (2)
Report

Thank you Rocknrobin. Mother just had her monthly check up Wednesday. As long as they saw a decline in her health, she was able to stay with Hospice but last week I was told the laws had changed. They evaluate her every few weeks. I'll Google what you suggested and check into it more. Mother has fair days to really bad days when we don't leave her. She has always walked a mile until last August and there has been a few days since she has walked it. Every couple of weeks, she feels like walking about 1/4 mile but then her feet swell badly. She's an unusual woman and keeps everyone guessing. Thank you again and I sure will do a Google search. Good idea.
Helpful Answer (0)
Report

Thank you dceeeee. I really appreciate your words. It's been a couple of days since I been on this site since I have found another helpful group. IDK if your Mom had Home Health or Hospice, but I would guess Home Health Care. My Mother's friend broke her pelvis last year right before my Mom was admitted to the hospital for a couple of days and the Dr ordered Home Health for her friend when she was dismissed. Hospice was for terminally ill patients but I was encouraged to call them for help. Indeed, they were about being able to keep the person at home and out of a nursing home as well as the original terminally ill patients. My Mother qualified. They have just been wonderful. Sure hate that the laws have changed and they are having to let many of their patients go. So sad. We did have an APS man visit Monday. He was very nice but asked the most confusing questions. It was irritating. He had my Mom so confused .... and me and my husband .... I felt so sorry for her. They told us there would be a decision in 72 hours but we haven't heard anything yet and he certainly didn't mention any charges against me as I was told. Mother still has her mind and was furious that he came and was his purpose was. We tried to reassure her that he was there for people who were mistreated. He then told her about a home he had just come from where the daughter was feeding her Mom cat food, hitting and beating her Mother and taking her money. I think he was impressed what he saw when he visited us. Still - I'm not putting the cart before the horse until I hear from them.
I think there are a lot of people here that are very compassionate. I guess I'm just not one to judge someone without asking questions before accusing them for their actions. Of all that I have endured in my life, my family certainly learned not to kick someone when they're down but lend an ear and give encouraging words.
Yes Ma'am, you are very blessed to have several in your home to help out. It's rough being the only living child. Thank the Lord for my caring husband who helps out with Mother. She so appreciates him.
Thank you again dceeeee. Your words meant a lot to me. Take care of 'you' during your caring for your Mom.
Helpful Answer (2)
Report

A Dr must determine and document the patient has 6 months or less to live if the patient condition follows the normal course. The time can be extended. The patient must have a face to face visit with the Dr or nurse to determine is still Hospice eligible. Google hospice and find a wealth of info. I just finished SHIP (Senior Health Insurance Program) and there is nothing in my book about being bedfast or usable to speak.
Helpful Answer (1)
Report

My mom used to get home nursing care after she fell and broke her hip. Is this the same as hospice?

@me only...so sorry you are going through this, and feeling you weren't being supported. I think everyone here tries their best to give the answer they feel is needed, and sometimes it isn't what we want to hear. Please don't leave, as I'm sure most of the time the answers will be helpful and positive. I'm sorry you are going through so much with your mom and wish I could offer help...but all my mom does is eat, watch TV, bathe, and sleep. I guess I'm lucky that she never tries to leave, or cook or get into anything. I'm also lucky in that my daughter and her sons also live with us, so she is never really alone.
Helpful Answer (1)
Report

@Hope, no sweetie, I didn't mean to aim my frustration at you. I appreciated the way you began you comment and also ended it. When I first read yours, it was a refreshing message that I believe I told you that your experience gave me hope since the NH turned out well for your precious Mom. If mine came across as personal to you then I owe you an apology. Maybe I wanted to assure you that it isn't my wish to leave my Mom alone and explained the situation that she refuses, against my wishes and advice.Oh my, we feel the same and have experienced some of the same comments that can make us feel worse about our situation.
The first two comments were hurtful, especially the first one. I honestly do not intend on posting any concerns on here again but would love to be able to support someone, just listen, maybe offer advice (if asked and if I had experience in that particular thing) and pray for them. A person has to be able to relate before they understand. I learned that in 1995. I have come across a new site and am going to give it a try once I sit back and observe for a while.
My heart goes out to you Hope. You are a great, loving, caring person to your Mother. I think God picks the strong ones to do this job but we are human and get support from others sometime. I'd like to look at your profile and see what all you are going through since I am a newbie. Stay strong, seek support from those who care and have knowledge of your situation. I'm always here to listen. I just said a very special prayer for you and your Mom. Hugs~~~~
Helpful Answer (1)
Report

Meonly...please accept my apology if I said something hurtful as it was not my intent and also why I began with I can only speak of my situation. I am the last person on earth to judge or make accusations towards anyone and the longer I go in caregiving the more I know that every situation is different. I am saying this to you openly rather than in a private message because I understand that it is hurtful when comments are made here that burn and sting. I had a couple of things tonight that were troubling me and I started to write a note on here and to be honest I stopped because of some comments that were made to me. After a few of those you just don't feel like emoting any longer. Again I do apologize if I said anything to make your already very difficult situation even worse....my thoughts and prayers are with you....
Helpful Answer (5)
Report

@ Hope, It isn't that I want to leave my Mother alone, I have worried and stressed over it for months, knowing that she needed someone with her 24/7. When I or others that I thought she might listen to, discuss having someone stay with her, she always refuses and gets irritated. Her request was to be able to pass away at home. A caregiver that stayed with her was my thought in caring for her and fulling her wish. Having the right person, a caretaker, to be with her would help me and certainly her so much. I pray that she would accept her condition but she just doesn't see herself in such poor, declining health.
The other comments about 'far worse charges than neglect' being filed on me, I don't understand. If the DPOA didn't give me the authority to have an ambulance take her to the hospital when it was OBVIOUS to anyone that she needed help and the drivers agreed, what would make anyone think I could make her enter a NH against her will?
As far as the so called 'love nest' LOL, I have a heart condition, my husband is 71, I have no family left as they have all died in tragic incidents and there are certain circumstances that doesn't allow me or my husband to stay with her all day and night, nor would she allow it.
My discussion was about the new changes that Hospice is facing, if anyone knew more than I had been told and what the purpose of APS was. I didn't expect to be judged and have a lot of 'speculation' written. I have seen so much love, compassion, respect and kind, inspiring words written to others in this group that I suppose I wasn't ready for the majority of this discussion. I was more scared, worried and stressed to tears last night and today, after reading the first 2 comments than I have been in a few days. Friends and Hospice have helped me a lot reassuring me so I was feeling a little better. I'll see if the APS calls my actions, under the circumstances, neglect. Until then, I will ask the Hospice patient advocate if he agrees charges could be filed against me.
Maybe this groups isn't for me. Best of luck to all enduring trials in your life as a caretaker. This caregiver group will be in my prayers for people in need and those who try to comfort them. Good luck, God bless.
Helpful Answer (2)
Report

I can only speak of my own situation. My Mama is totally bedfast, so I know she is not going to be up and about and doing anything..nonetheless, I would NEVER think of leaving her alone...nor would I have after it was determined she had advanced dementia. It just was not safe for her. Similar to small children, when you're not there, they can get into anything in a hurry...and before she became bedfast, I surely could not have left her alone for any length of time...In her state of mind, she might promise she would not get up, not do this or that....but turn your head for one or two minutes and there she would be, trying to get up and go....I just couldn't leave her alone...then or now....perhaps the NH would be the best place for your Mom at this point...best wishes for her and for you.
Helpful Answer (3)
Report

I apologize for being so lengthy in my above post.
I do have a question about me being my Mother's DPOA & the responsibility it includes. If the APS would hold me responsible for her proper care, it occurred to me of when I called an ambulance last year when I found her vomiting non-stop - all over her bed and bathroom along with babbling, not making any sense at all. She was severely dehydrated and we didn't know what else had happened to her. I told them I had DPOA but they said they could not take her to the hospital because she knew her name and answered a few other questions correctly - that I would need guardianship over her??? I thought the document allowed me to make that decision for her but it didn't. Two horrible weeks later I convinced her to go to the ER where they kept her for 2 nights.
Helpful Answer (1)
Report

My Mother has dementia, scoliosis, osteoporosis and they believe heart problems but she is not a candidate for testing because of her weight range of 65-70 pounds, age and health conditions. The Dr. has told me the veins in her brain are getting smaller and also in her legs which cause swelling. She sleeps almost all the time. I live 2 minutes from her. My husband and I are in and out of her house all day. There hasn't been any issues during the night as we have and do check on her all hours of the morning if we wake up then my husband is there early in the morning to give her the med's. We can tell she never gets up during the night.

She qualified for Hospice last October based on these conditions and the Dr. approved but they told me that ONLY people who were bedridden or could not talk were the only ones they could accept and would be letting several patients go. They did tell me they were looking into everything to keep her as they believed she needed their services, so I have some hope but not really depending on it.

I did speak with someone who has had experience with APS and was told that what the report was based on (the burner being on) was really not an issue in their opinion since we disabled the gas. However, I don't know anything about APS so was curious as to what their reasons would be or what they could do. I did explain the situation to Mother and she was furious that someone could control her life. She is still able to think and understand but the dementia makes it where she doesn't remember. Her Dr, which she has had for 35 years, told me he wished that she could just go to sleep and not wake up. He cares for her that much. In the beginning, last October and several months following that, she did black out and fall fairly often but that has stopped for some reason. Maybe because she sleeps all the time. IDK I definitely will listen to the APS if they do recommend she be moved. I want what is best for her at the same time, try to fulfill the promises I made to her a year ago. The patient advocate did tell me that hiring someone to stay in her home would be acceptable. Not sure I can find someone to do this yet though. I appreciate the info on APS. Thank you.

I do know the NH in the area. We are rural America. She has a lot of friends at one nearby. I don't think she would qualify for Medicaid since she has a bank account, car, etc. Thank you for the kind and supportive words. Since it is all on my shoulders and we have always been so close, still are, this is just the worst time for me. I am realizing she would be better with 24/7 care but have to admit that it will be harder on me to walk away from her room than walk away from a funeral. She has always been so active up until a year ago besides only living alone in the country. She will feel like a caged bird but that could change. You give me some hope after your experience with your 93 year old Mother. It hurts me to see her have to live the life she has now. There are just so much bad that occurs at NH's that I cringe. I appreciate all and any comments so I can better understand the new laws of Hospice and about APS.
Helpful Answer (1)
Report

I don't know the details about the changes to hospice, except it is harder to qualify now. But laws and rules aside, it does sound like it is no longer safe for your mother to live alone, or to be on her own for more than brief periods.

Have your looked at all at the nursing homes in your area? If you don't have one picked out, now is the time to start that process. Also, is Mom on Medicaid? Will she need that to pay for the NH? If she is not already on it and she needs it, applying is a high priority.

My mother (93, dementia, arthritis & mobility problems) has been in a nursing home since March. In April she broke her hip and therefore qualified for hospice. Hospice was a nice addition to her care. She has improved greatly and it looks like she may "graduate" out of hospice next month. While we will miss the extra services I'm pretty confident that the NH staff can provide the care she needs in her improved state.

I know how hard it can be to place your mother in a care center. You might be surprised at how good it can really be for her. We were!
Helpful Answer (3)
Report

The eligibility rules are tightening up, now the MD must provide documentation of a terminal illness. Dementia alone will not qualify, there must be a disease that would lead to death within six months. We were told that our daughter could never be left alone at any time. Your mother has both falling and danger using the stove, so she cannot be alone either. Since you have DPOA the APS will hold you responsible for someone being there 24/7. APS will stress the need for her safe placement, the time is now and you as DPOA have to either agree to that or resign your DPOA. Should you insist she stays home and insist you are DPOA, there is a good possibility they will ask for charges of neglect and removal as DPOA if she is left alone again. The judge would likely rule on their side and order her moved to a Nursing Home.
Helpful Answer (3)
Report

This question has been closed for answers. Ask a New Question.
Subscribe to
Our Newsletter