What is reasonable to expect in skilled nursing?

Zanniegirl: I read your previous posts and checked out your profile. My heart goes out to you. I can see how much you love your mom and also what a toll it takes on you to try to give her the best care possible.

For what it is worth, go to Medicare.gov. At the top of the page you will see Resourse something...can;t remember, but it's one of the few headers. Once you click on it a pull down menu will give you some options. Pick Nursing Homes Compare. You can put in your zip code and a mile radius and it will rate the NH's in your vicinity. The NH's that take Medicare are reviewed annually and they are rated on a 1 to 5 scale in various areas and then over all. This will give you a good idea as to how the NH your mom is in rates in comparison to others. All of them have skilled nursing.

We have had my dad in our home for the past 8 months due to a severe stroke. His speech, like your mom's is severely impaired. His vision is compromised from at 2002 stroke and he is very hard of hearing. About the only thing he can do for himself is lift a spoon and feed himself.

It's heartbreaking to see these things, but I am extremely grateful that my dad in not in pain. His mind is not tortured like those with AZ and he is not in pain like many with cancer, so that is a comfort.

Check the site and see if other facilities in your area have a better rating. The excess noise is not necessary...in my opinion.

Here's my question to you. How is your mom doing there. I can see that you are unhappy. You can compensate for the food, but how is she doing? Is it harder on you than it is on her?

My dad also had swallowing issues due to his stroke. That has gotten better, but the rest will not. He will be 90 this September. We have taken care of my parents on a daily basis for the past almost 7 years. My mom passed in 2008. They lived across the driveway from us in a house we built for them after we retired and moved to our current location.

I can tell you that it has been a strain on us to have their care solely on our backs for all this time and that having my dad living with us is not the least bit easy. He has our bedroom with the attached bath that has a walk in shower for his ease. We sleep in the guest room. We feel like we are camping out in our own home.

Your mom is in the right place. I just want to tell you that we are now in the process of taking steps to place my dad. As bad as I feel about it, I don't want to live this way anymore. There is no joy to life. I feel like I am in a prison. If your mom was with you in your home, you would find that the stress of her care and the disappointment both you and your husband experience would be extreme.

I think there are very few lives that end with just going to sleep at night and not waking up in the am. You asked, "Is this the best I can expect for the end of my mother's life?" Yes, this may be the best you can hope for. Sad to say. Check out the Medicare site and see if she can be in a better facility. If so, have her moved. Do that by meeting with the social worker at the facility you want to have her moved to. They will help you make it happen.

I;m sorry you are going through this heartbreak. Short of a drop dead heart attack or a peaceful night time passing, the end of life is trying to watch. It may be harder on you than it is on her. I hope that is true.

Not sure anything I am saying is helpful. I will keep you and your mom in my prayers. Don't be angry with your husband for being truthful about his feelings. My husband has been a saint, but he is just about at the end of his rope and I am too. Love and best wishes, Cattails.

Zanniegirl, I'm sorry about the situation with your Mom at the NH. The noise level can be quite annoying and upsetting. My mother is in a NH, but fortunately it is mostly a quiet facility. I have been in others that are quite noisy with the TV's blasting and all.

Is there any way of requesting a room change possibly? My mother had changed rooms several times for various reasons. Take care.

Dearest Cattails, thank you so much for your kind and thoughtful e-mail. I have been in such anxiety over this - it is a nightmare and I doubt that any of us thought the end of our parents life would be so difficult and such a strain on us to give them care. We only have 4 Skilled Nursing Facilities in our community. My husband and I visited all of them and the one my Mom is in is the best in our opinion. I was shocked at how bad the food is, and the noise level - but at least I can supplement the quality of the food.. The only other choice I have is to move her to the next town which is 25 minutes away (on a bad road) and would put a big strain on me - as I need to see her everyday for her emotional support (and probably mine). If she can get stronger and safely transfer herself to her wheel chair and improve her speech I may be able to send her back to the nice assisted living apartment she has. We cannot hold onto her apartment for very long because we are paying out of pocket for the Nursing care (so double rent for the time being). She was not in the hospital prior to going there. The assisted living home just could not accommodate her any longer. They are just not equipped to have her safely now. My husband too has been a saint through all of this. He does all of my Mother's financial business and spends hours sorting through her medical bills, etc. We are blessed as she bought Long Term Care at my suggestion years ago. I awoke tonight couldn't sleep and decided that I was going to make a commitment to work with her on her speech everyday to see if we can get some improvement. The doctor had ordered her to have speech therapy and I need to get more involved. I have to admit that I have more or less thought that the therapist would do the work on her recovery process - but slowly have realized that she will need more then they can offer. She is 87 years old, was a talented artists and a court administrator - and I just want the end of her life to have more dignity. I have come to a slow awakening, as you have, that very few folks die like in the movies - most suffer a slower debilitating death. It sounds like your Dad and my Mom are both trapped in their bodies with a good mind - that is so hard on them, and to witness.

Your points are well taken when you wrote about the possibility that I am mixing up my sadness with how my Mother may be experiencing things. My husband has pointed that out to me as well. I think my Mother is suffering though, but I don't know if it is because of the skilled facility or because of her stroke - she says she has no pain. When she was in assisted living the helpers loved her, but told me that she was really suffering with her entrapment. She has had two strokes that we know of. One about 3 years ago, and another just recently. Although Mom hasn't lived with me I have dedicated myself to her care. I spent up to 6 hours a day at her apartment taking very few days off. I was glad to do it, but have found my good intentions have wore me down more then I could have ever imagined.

You have been such a wonderful daughter, and your husband too. I don't know how you have stood up under this for 7 years . One woman I met whose Mother is 100 took care of both of her parents in her home for 6 years, then when her father passed away she moved her Mother into the same assisted living home as my Mother. She is there all the time caring for her Mother. One day she broke down and told me that it has pretty much ruined her life. I get the reaction from folks who do not know that they don't understand why I have to do so much for my Mother when she is in Assisted Living... they feel that all of her needs are taken care of there, and it is almost like they are judgmental of me for for spending so much time caring for my Mother. It is shocking to me how many people have no family visits from their kids. My own sister only comes a couple of times a year for just a few days, and my brother every couple of years. They live out of state. I am retired and they both still work for a living so I try to understand that. I am getting the same reaction from others now that Mom is in Skilled Nursing...others just don't understand why I need to be there so much. To tell you the truth I think that if I stopped going several times a day, my Mom would go downhill fast. When I am not there her roommate tells me she cries out for me.

It sounds like you are making the right decision Cattails for placing your Dad. It is heartbreaking I know. I don't know how you have done what you have done all these years. I guess just one foot in front of the other - but bless your heart. It won't be the whole answer to place him, but at least you and your husband can have some time together without your Dad's constantly needs. The turning point for me was that her assisted living could no longer safely care for her - otherwise it would have been very difficult to make the decision. She needs more help then I can give her in my home, or even in her assisted living apartment. I know I am not strong enough to have my Mom here in my home, even if we hired help. When I am home it gives me a little sanity for awhile and that does help. It will be very hard for you and your husband, but it will eventually be easier. You have to do it. As awful as this sounds, my prayers are that if God cannot make my Mom stronger and more at peace, then he takes her home. None of us will have any relief until our parents are at peace - and then there will be an aftermath of all this stress on ourselves. I know that sounds dismal. Well I better get off this computer it is almost 6:00 a.m and I have been up for hours - I will try to go back to bed and catch a few winks before heading to my Mothers. I have a plan to help her with her speech when I visit, and to take food at least once a day to supplement what she is receiving there.

I hope this note isn't to rambling and burdening you with my fears and thoughts. Thank you so much for your kindness, it helped and now I am ready to face things again. Bless you. Love, Suzanne

Dear Pink Roses...love your sweet name. Thank you for your input. My Mom has only been in the skilled nursing for a week - they did change her room to a quieter room, but still a TV watcher. They gave the other person earphones, but she did not like them - so they moved my Mom to another room and had to move her again because the name of the person in the other room was so similar to hers that they were afraid of a medical error. So 3 rooms in less then a week. The good news is she has a window to look out, which is such a blessing. The staff are so hard working and really nice which helps. I think I am just in a little culture shock and it will take time. Thank you for being so kind in your thoughts.

The new room also has a person who needs the TV on loud to hear it. I tried earplugs for Mom and she could not tolerate that. If it looks like Mom will be here for awhile we can request a more long term room, or even a private room. I think I just have to be more patient with the process and see how it goes. I am a little panicky this week. I feel so much better after talking with all of you here - not quite so alone. This is a wonderful resource to all who care for someone. Another thing to be thankful for.

Dear Zanniegirl,

I can so relate to you and your mom. I go every day to see her, and no one can understand why I go so much. My mom lost my dad in October, me and my mom were very close, I saw her everyday at home, I helped my Dad take care of her. This is breaking my heart also to see my mom like this. She can't get to the bathroom anymore, she has a bad back, they have to get her out of her bed with a machine, it is so sad!! My heart goes out to you also!! Don't have any answers, just pray it gets better for all of us!!

Maryanne, it is very painful to watch our beloved Mothers struggle like this. I live right down the street from the skilled nursing which helps. I couldn't sleep tonight and drove down to see what her nights were like. She was just sitting up in her bed. She was so happy to see me and did lay down and fell asleep. I at least saw that she was ok. I talked to the night nurse and it reassured me. I think I am beginning to feel more secure that she is safe and they have good people that care. That is the most important thing...that and safety.

I am so sorry you lost your Dad. I lost my step-dad who I loved as my Dad, about 9 years ago. It has been very difficult, especially for my Mom. It sounds like we both are going through a life transforming journey now. I tell myself to just try to take it one day at a time. I know about the machine you are talking about as they used one on my Mom when she was in the hospital. My Mom's weight makes it difficult to transfer her but we can do it as a two person transfer now without one of those machines. I know how you feel watching that, it scared me to death, but it really was frightening for my mom. I m so sorry your mom has to endure that. I think we see our Mom's and we see ourselves too. Old age is very frightening. Your Mom is fortunate that you are there for her, as my mom is. We are all they have and they are our Mom's. We have to be there for them as this is the worst time in their lives. Hugging you!

That is great you can go at night and see your mom. I can go up to 8:00. Do you happen to be a Virgo, I am and it seems like Virgos are very caring people, and you are a very caring person!!!! I often wonder how I will be when my Mom passes, this experience I guess is preparing me for it, and sometimes I wish God would give my mom peace and take her, but just can't imagine life without her either. Hugs back to you and hope you are having a good day!!

I don't know if this is an option in your area. I was fortunate with my mother to find a private home for her that took in "boarders" and provided 24 hr care. It was also half the price of the cheapest local nursing home. They had bed-bound patients and wheel chair patients, and Medicare came in 3x week to bath and take vital signs. I thank heaven I found this place -- it was by word of mouth, and was the best possible end of life "family" situation I could have found for her. If you work, ask everyone if they know of group homes; the local Walmart hairdressers knew of this place because the hairdressers would go there to do their hair. I looked at it numerous times before I actually put her there. They also made it clear I could show up at any time to check on her. She was there for 5 years before she died at 93. and I think she would still be alive if she hadn't caught a cold. I wish I could put my father in the same place but he is so verbally abusive he would destroy the calm homey atmosphere.

Finding a good place is tricky--i saw an expose about group homes in Florida that were a huge scam, so you have to be careful. You have to be willing to go check them out and do the research, and follow up on references.

Google "group homes for the elderly", "senior group homes", "residential elderly group homes" and variations on those types of words.

MaryAnn, that was a good suggestion and I remember now that the Home Nurse that used to care for my Mom in assisted living told me there were alternatives and we should talk to her if my Mom ever had to leave the assisted living she lived at. I am going to call her tomorrow to see if there are any alternatives here in my town. I have a lot of things to follow up on tomorrow as no-one was available over the weekend. My husband is out of town and I am just so worried about my Mom's care I am so anxious. Most private homes are not equipped to assist someone like my Mom, but I will look into it. I am an Aquarius. Sweet friend I too worry how I will cope with the loss of my Mother. She is such a integral part of my life also. It is really going to be hard and I am thinking that grief will not come all at once, but in swoops. Right now I feel my Mother is suffering and sad - and I don't know if things will get better for her. I get criticized often that I should not care so much...and it is hard for others to realize that it is not about dependency, it is about compassion for the end of my Mom's life and she deserves my time and attention. I just can't get rid of the heartsick feeling I carry. When I am with her I feel better, but after I get back home the anxiety starts all over again. I too have prayed that God either make her stronger, or bring her peace, this is no way for someone to live. I think you are right though that this all may be process so that we can let go when the time is here. I feel exactly the way you do...we just have to somehow find the courage and strength to deal with all of this,but I have the same fears you do. Many hugs to you and I will include you and your Mom in my prayers.

Whoops, I just noticed I posted to MaryAnn57 and the helpful suggestion was from Rockhardplace. I should be more careful!! Thank you so much.

First of all, Cattails, once again you are the voice of compassion and reason. I can't tell you how many people you have helped on here just with the goodness in your heart.
ZANNIEGIRL, I think that no matter where we place our loved ones, it's never ever going to be good enough for our parents! We want them to have everything and more that they would have had at home. Unfortunately, I too found out that that is just not possible. Mom went into the nursing home after a fall. She could not communicate so it was up to me. The noise level also bothered me in the room as her roommate had the TV so loud and I knew it must be bothering mommy (we know our parent more than anyone does). I also wanted mommy by a window which was more private for her. For some reason, after hitting her head that day at home, she kept pulling her clothes off in the NH. She was so hot....then cold. It didn't matter because most times it didn't make alot of sense but....I surely did not want her on the side where someone walks in the door! She was undressed half the time before the staff could put her clothes back on her. She NEVER would have wanted that and would have been mortified if she knew what she was doing.
I had mom moved to another room and bed which was so much better for her and all it took was asking like you did. I guess my point is that it is US that have to adjust to the fact that no one anywhere is going to take care of our parents like we do. It just isn't going to happen sadly. I can say however, that I think my mom was taken care of even better than most because I was there at least 2-3 times a day for her and the staff really got to know me well. Also, it doesn't hurt to send in a pizza or two for the staff now and then. I also brought back pralines for the staff after a trip to New Orleans. Sucking up in this situation sometimes works well. They were wonderful with mommy until the very end. They were sitting with her as soon as they saw it was the end for her and holding her hand. I didn't get there in time as she went so fast. The funeral director who came to get mommy after her passing said you can tell a good nursing home by the way they treat the dead. He said he had never seen a nursing home take such care of the person after death. 2 of the nurses even wanted to walk down with him to make sure mommy was treated right in death. Maybe, just maybe, it would be a good idea to talk to funeral homes and hear their thoughts on the nursing homes you're able to consider. Morbid I know, but just a wierd suggestion that might work for you. I wish you so much peace and calm. This is a difficult time and NO ONE know how difficult until you've been there. Love to you today and in the future.

I work for a NH in central California, I see this emotion all the time from families, especially with Daughters. The noise level can be at times quite high and it does bother people and then you just get use to it. It had to place my own mother in each of the 2 facilities that I work for. It is a big adjustment. I think alot is the guilt that we as daughters get, as we think why can't I take of her. Both of our facilities have shut off times for TV's etc and if they need the TV louder than normal then they must wear earphones. As to the Food remember they are not preparing home cooking. You would not believe the amout of guidelines they the kitchen must work with. They really do the best they can. I am only defening them after I acually started working here as it was a source of complaint from my mother as well. Ask about her meal plan and what she has to choose from. You should have a care conference soon and bring up your concerns. One of the biggest things is that you should never show up at the facility at the same time each day. They reason for this is to get to know all the staff and them to get to know you without
them only hearing that you are upset about something. Bring the nurses cookies or some flowers from your garden. Good Luck and God Bless.