Advice and Prayers

I am so sorry to here of your mom. I also had a father died from this horrible thing. He could not lay he had to be elevated and even slept sitting up in a chair. Eventually heart failure from fluid took him.
I just wanted to let you know you are in my prayers. I have no other suggestions or answers for you. Enjoy the time you have and God bless you all.
They do have assisted living in some areas, where she has a place in a nursing home yet her own bedroom and round the clock care when needed. They are really nice.

I don't know much about emphysema, but I just want to say that I feel for you. You have your hands full! Your kids and your mom needs you all at the same time. I just thought I'd tell you that I think the other responses sounds like good advise and I wanted to let you know that you, your mom, and the rest of the family is in my prayers. God bless you! Definately hope that her Dr. has some good advise on home care at her house that her insurance can pay for or something! Good luck and God bless all of you.

B.,
I don't know if she's at the stage that hospice might be willing to assist, but I do know otherwise there are in-home care specialists that specialize in coming in and caring for your loved ones . They also do have programs that have people whom can stay the night. If you'd like I can do some research. Let me know where you live and I can find the ones closest to you. I used to do in-home care so I know all about these and how great they are for the people needing care and the families.
I'll keep your family in my prayers.

Try contacting your local DHS (Dept. of Human Services). They will have information on what programs or possibilities there are in the area. They have been a wonderful help to me with my mother, who is 91 and has dementia. I am lucky that we have an office right in the same small town that I live in.
My prayers are with you both, as I really do understand the need to keep grandma around as long as you are able.

Hello...I do private duty home health care and have sat with many people at home with emphasema. Its a tough one I know. My grandfather had it as well. If you need any help feel free to call me ...home health isnt cheap sometimes but it does keep them out of the nursing homes. My name is K. and my number is ###-###-####. I live in Collinsville. Does she take advair? or any breathing treatments?

I would recommed looking into Hospice as well. I know with my grandma they were able to offer some services she could use, at least during the day hours. I don't have any ideas for the nightimes though. I know this is a hard situation to be in, I wish the best for you and your family.

Hi B.,

Have you looked into finding a sitter or companion for her in the evening/night hours? Also..depending on her current health status, she could qualify for services through Medicare, Medicaid or if she is the spouse or surviving spouse of a Veteran, home care services through the VA.

There are resources available, but some are more expensive than others. I can make further recommendations if you are willing to provide more information.

Good Luck and God Bless!

First. HUGS to you and your family.

My grandmother fought emphysema and lung/kidney cancer. When her health got worse and she was no longer able to care for herself, I moved her in with me. I am a single mother of one and it was difficult task to take on. I cherish the moments I got to spend with her but it truly was hard. She was not safe to be on her own, especially as her illness got worse.
While in my care she fell a few times trying to do too much, if I hadn't been there, she wouldn't have been able to get herself up.

My mother was able to stay with her during the day while I was working. We contacted Hospice and set her up with them, and they were able to give me organizations that have volunteers to sit with them and spend time with them.

If her safety is a concern then I would suggest moving her in with a family memeber, however it does take a lot to care for a loved one who is no longer able to care for themselves. It's hard to think about putting a loved one in a "home" but there are some great loving enviroments that can provide the care she needs.

Best of Luck

Hello my name is D.. I'm an RN and I've worked in a Long Term Care setting for the last 15 1/2 years. Not all L.T.C. facilities are bad. It sounds that your mom might be ready to move somewhere where she knows there will be 24 hour care. There are all kinds of Assisted Living Facilities which also might be a good solution for her. They have emergency call systems so when she's feeling really anxious, all she would have to do is ring for the staff.

Has she ever said she doesn't want to be a burden on you girls? I'm wondering if she's feeling guilty that you girls are spending time away from your family's at night, which makes her more anxious? She knows you girls all love her and want the best for her. I am not that far from your mother's age and I wouldn't expect my daughter w/2 young one's to come take care of me at night. The guilt would drive me crazy. I also would not expect my son to leave his family at night, to spend the night with me. Think about it, would you expect your children to leave their families when you're older to come take care of you? I'm just asking you to think in your mother's shoes, not your daughter's heart.

You mentioned that when you laid down with her, she was having such a hard time breathing. Is there some reason why she doesn't try sleeping in a recliner-type chair? Most emphysema patients sleep better in an upright position. This eases their air-way. Also, they generally do better in a cooler room, with a fan circulating the air.

The anxiety that any person with Chronic Lung Disease has is extremely frightening for them, as well as for the family/loved ones. They feel that they're not getting enough air when they breathe, which makes it harder for them to breathe, and the circle just keeps widening. Has her doctor tried anything in a medication form to help her Anxiety at night? There are a couple of medications which could help her. I don't know if that's something you've tried already.

There are folks living all over the world in facilities who are happy. They know the staff cares about them, their families love them. They know that if something medical is going on, there are nurses to help them.

I just wanted to assure you that there are lots of nurses who love their job and residents. We're not all bad and I know you aren't thinking that.

I wish I could tell you that your mother's problem will get better, but I think you know that this disease doesn't go away... And I know you want to keep your mom around a long time. What good daughter doesn't? My Mom and I are best friends as are my daughter and I.

I wish you all the best and have said a prayer for you. God Bless. D.

I work in a nursing care facility and deal with issues like these all the time. It is very expensive to get in home care, however if you did not need it 24/7, you and your sisters might be able to arrange for this. The best bet would be to talk to a social worker through the hospital or Home health company your mother uses. I am a physical therapist so I don't have direct information on resources. You could probably find home health agencies that arrange private duty care in the phone book. Also, if she is actually the one suggesting a home she may actually want to do this to take the burden off her body and her family. Assisted living is another option where she could still retain some independence but have someone there for her peace of mind if she needed something. This, of course, is also an expensive option. Good luck with your decision.

B. I have been through everything you are going through and more. My father had the same thing and he also lived alone. I was the only one who was taking care of him and he lived 45 min. away. My advise to you is to get help at night when you are not there. Unfortunatley that kind of help is hard to find. Assisted living is a great thing. I finally had to do this for my father. He did not like it at first but after a while he loved it. He made friends and there was always something to do. I did not give my dad a choice..My husband finally told me I was going to have to choose between my family or my father. He only said this because I had to spend so much time at my father's house caring for him that I rarley saw my children-only a hour or less a day. My husband was raising our children without me for several years. Once I moved my dad into the assisted living my life did get better. But I have to admit that I felt guilty for a long time. I felt like I just abanded my dad. Even though I visited almost daily I still felt bad. About 2 months after my dad moved in he was diagosed with lung cancer and needed more care than I ever could give and he knew it. We ended up with hospice in the assisted living. My dad had great care during his final days that I never could have given him. Just the breathing issues alone were much better with others caring for him who had experience with all of these things. We placed my father in the "Sweet Life of Shawnee" on Johnson Dr. and Rosehill in Shawnee, KS. Great place and people. You and your sister need to do what is best for everyone involved and your mom should understand that your own family are important too. Good luck. S. D.

I work at Christian Hospital and wondered if your mom has ever visited the Breathing Center across from Northwest Healthcare on Graham Road. They may offer her some help.

Is there is an older girl in your family (that drives) or close family friend that is also alone and wouldn't mind staying with you mother at night or that could possibly move in with her? That would ease you and your sisters minds about no one being able to stay with her constantly as she would get a companion/care-giver that you trust and possibly help someone else out at the same time.

Hi B. - You might be suprised what the right nursing home can do for your mother's health as well as her happiness. I have a 91 year old grandmother and lost my mother (her only surviving child) many years ago. My grandmother always made my mother swear she would not put her in a home, so me and my sisters did our best to keep that from happening. She has had many health issues and had to move in with my sister (she had the best enviornment for her). After she broke her hip last year we had to move her into a rehab nursing home for her recovery. She absolutely loved it. Every time we would visit, she would go on and on about the staff and the people in her unit. She loved the activities and was happier than she had been for a long time. After her rehab was finished she moved back to my sister's home and we saw a major difference in her moods. 2 months after coming home, we discussed her depression with her and she agreed that maybe a nursing home would be best. We did alot of research to make sure we were choosing the best for her and after all of that, we ended up choosing the nursing home that was attached to the rehab hospital she had previously been in. The day she moved in, the staff from the rehab side all starting popping in to visit and let my grandmother know she was missed. She is a different person. She absolutely loves it there and we visit often. Unfortunately she loves it so much she is reluctant to come for visits, even for holidays, because she is worried about the activities she will be missing. Whenever we visit, she has a smile on her face and some really great stories about the goings on at her new home. I wish we would have done this years ago, because it has been a long time since I have seen her so happy. My prayers are with you and as far as my advice, start researching homes in your area and let your mother be a part of the decision. She just might suprise you! God bless = )

There are other types of facilities that are not nursing home based. What kind of insurance does she have? My mom is in a nursing home know, but in the beginning she was in a rehab center, she was at the beginning stages of Alz, and it was an easy transition for later when she needed full time care the worse she got. What about hiring a nurse to come in. SOme people do this for a living. Ck out the Senor Citizens City Programs for recommendations. You definately need to get her out of her home. (If she is still living there) It is time!
I know that is not easy to hear or think about, but think of it as just a step, one step at a time. It doesn't mean you all are sealing her fate. SHe may have 20 more years with you!
She just needs TLC from a professional.
What would she want you to do? Your priority is keeping your family together, husband, children, then your mom. There are other facilities before nursing homes. Also, it's all in the approach, how you present it to her, your attitude, ect...
Good Luck!

Try your local Area Agency for the Aging and see if they can offer any suggestions or advice since they would be more familiar with this type of thing.

Good luck,
D.

What about a home health nurse that could come in the home and check on her, or a CNA that could stay with her?
I work at a nursing facility, and we have a residential care facility where it is basically "assisted living". They have little apartments that they live in w/kitchenettes. It's very nice & we have lots of activities for them to do if & when they want. Just something to think about.
P.S. My mom's name is B.! How weird is that!

Dear B.,

My mother also has emphysema - probably not as severe as your Mom.

I don't know if this will help - but I would like to tell you about a very unique air purifier that has helped many people with asthma, emphysema, allergies,etc.

One lady, who was on oxygen 24 hours a day was able to go without her oxygen as long as she remained in her own home where the air purifier was working. She also experienced less meds, fewer breathing treatments in just one month...

If you would like to get more information - please feel free to call me or go to my website at https://www.shaklee.net/ser/product/55102

I am a Health & Wellness Advisor and have been in business for 14 years. I myself, was totally disabled in 1994 and today, I feel better than I did 20 years ago!

I will definitely keep your Mom and your whole family in my prayers - take care of yourself.

S. Riemann ###-###-####

What if you speak with the doctor and see if you can have a 24hr nurse come in, or set up a schedule where she comes in when you and your sisters are unable to. My dad was diagnosed with cancer and within months he was gone but before that we had hospice come in because he didn't want to die in a hospital. But she only came in 2x a day because I am an EMT and we also knew there wasn't much for her to do. So when she did come she checked his vitals and see how responsive he was. We gave him his morphine and changed him and all that. It is hard I will not tell you it isn't. Just see if there is anything the doc can do for you or call the insurance company and see what your options are.

T.

Hello B., My name is R.. I work in a nursing home and see this all the time. I do have a question for you. Is your mother on any kind of meds for her anxiety? I know that wont help with the emphysema but it might help her with the anxiety of her breathing difficulties. Anxiety attacks always make the breathing more difficult. If she isnt on anything, I would suggest you talk to her doctor about the attacks and maybe he can prescribe her something. Make sure though that it isnt anything thats going to turn her into a zombie or contradict any other meds she might be taking. Some doctors seem to like to over medicate the elderly. Also does she get any kind of breathing treatments? Also check into Home Health Care in your area. My mom is 83 years old and still lives in her home and we have, threw our health department, a nurse that comes in twice a week and gives her her showers and sets up her meds each week and also makes sure she gets her B12 shots every month. We also have housekeeping services come in every other week. They clean and do laundry. This is threw our Council on aging program here in our county. Then we have Meals on Wheels. They bring her in hot lunches everyday so that we know that she is eating. The nursing home facility I work in also has adult daycare. In your type of situation, some bring in their loved ones for the day. We have a bed for them so they can nap and they eat their meals there for however long they are there for the day. They are also able to get their meds and do activies. At the end of the day they get picked up and taken home for the night. So you might also check out any facilty near you and see if they have that type of service. There are so many people in the same situation as you and they dont know what to do. I sure hopes this helps. If I can think of anything else, I will sure let you know. Also, if you do choose to put her in a nursing home full time, and she is on medicaid, please make sure that all of her property, cars, bank accounts etc.. is in someone elses name. Medicaid is very sneeky and will try to take everything the elderly owns. Good Luck........R.

If you mother has mentioned going into a nursing home, I think she is realizing that she can no longer take care of her home and herself & she doesn't want to be a burden to her children who have families of their own to take care of. In a nursing home she wouldn't have to walk from room to room. It would be easier for her to breath. Other people would take care of her needs. The important thing is for her family to visit her daily if possible if she is in a home. Take the children there to visit her also. All of the elderly that are in a home enjoy seeing children. I am a 64 year grandma with 8 grandchildren & 4 children whom i love very much.

After my Grandmother had her stroke and she ended up in a nursing home, I can completely understand why you don't want to put your mother in one. But there are assisted living communities that have a lot of the benefits of a nursing home, yet the occupant has their own apartment. I have had asthma for over 20 years so I understand how horrible your mother must feel. If you do decide on a nursing home or assisted living, make sure you inspect them very closely. When you visit check under the beds, look for leaks in the bathroom, look in places you would never look if it were anywhere else. The good places will understand and appreciate your care and concern. Good luck!

I know what you are going threw my mother had it, and only lived to be 47, Call Cheryl or Natilie at American Home Companion they can find some one to stay the night and there prices are cheaper then most places, and they are Christian women, they help me out with my friend Ruth, and they are good, there number is ###-###-#### tell them B. sent you Good luck and God bless B. Coffman

Hello. I hope what I'm about to type helps you out. Since she's 65, has she applied for Medicare/Medicaid? If she has, chances are she would be a candidate for home health & in home services. Some insurance companies also pay for this. Home health, they do visits to check on her. In home care-they can stay with her. There is at least one here, in Lebanon/Springfield, that they can stay on average of anywhere from 2 hours to 24 hours. You should call her insurance to find out what they will pay for & whom they will pay for. There are also privately owned companies, that do not take insurance/Medicare/Medicaid & charge by the hour. This can be costly, but at least they can stay at home & not go to a nursing home or assisted living facility. You can do an internet search for providers in your area. If you have more questions, please feel free to message me. On most of these services, you have to have a Doctors approval before they will come out. Or her doctor can set it all up for you, which saves you the hastle.

I sincerely hope this helps!