Mom (stage 6 soon to be in 7) can no longer handle going down the stairs every morning. So I have put her to sleep in stepdad's recliner (he passed away in Aug.) until my nephew and a neighbor come on Sat. to move her hospital bed from the 2nd to the 1st floor.

There is a small bedroom on the 1st floor that we use as her commode room during the day. It also has shelving units with Mom's collection of porcelain dolls, and other stuff. I wanted to turn that room into her new bedroom, but two of my sisters do not like the idea.

They slept in that room as children, say it gets too hot or too cold, and that it is depressing.

I originally told them I'd put Mom's bed in the living room to make them happy, and because I believed it would be "nice" for Mom. But after thinking it through, it does not seem like a good idea for various reasons. I am not even sure what my reasons are. Partly it's Mom's need for privacy. Partly it is that the bed is ugly! And I want to set up the room now before Mom is completely bed-bound.

And finally, because I have a life, though not much of a life, as her sole caregiver. My sisters help from time to time, but one lives in PA, and one lives in her own apt. (Mom & I live in NYC.)

I love my sisters dearly and don't want to hurt their feelings, but Mom is, after all, their Mom, too, so I don't want them not to give me their input. However, I need them to know I will consider what they say, but that, ultimately, I am the one who has to make the final decisions.

I have been under enormous stress, having cared for a very sick stepdad who treated me horribly. I finally am not constantly afraid, anxious, and angry. But with this new development, I am once again distressed and extremely fretful.

I just want some input, suggestions, support, etc.

Thank you.

Bless you for what you are doing. I am like your sisters- out of state for most of it. My sis and mom do it all and I just hear about it on the phone.

With that in mind, you should know that your sisters don't have any "right" to input other than what YOU give them. They are not the ones in the trenches, you are!

Do what you think best for you and your mom and don't forget to think of your own needs in how you must situate your mom. You know which room is best and it sounds as though you have a couple to choose from. You can use the one that's best for winter now, and actually move her into the "summer" room later if need be.

PS I am here taking care of daddy now while my sis takes care of mom for her surgery in the hospital. You don't really know what the caregivers go through until you do it yourself for awhile. I've been here 3 days and already feeling drained. You took care of your stepdad and now late-stage mom? Even if your sisters don't say so, I'll say it for them. YOU are awesome!

I originally told them I'd put Mom's bed in the living room to make them happy, and because I believed it would be "nice" for Mom. But after thinking it through, it does not seem like a good idea for various reasons. I am not even sure what my reasons are.

If she is in your living room, you will have no privacy either. There has to be some separation area for you- very important to have that if you can manage.

Saribet, don't let your siblings bully you into doing something that is not right for YOU and which, frankly, will not make an iota of difference to your mother or the quality of care she is receiving from you. No doubt there are any number of things you can do to moderate room temperature, if necessary. And remember, what's "too hot" or "too cold" for a child is unlikely to be the experience of an elder in diminishing physical condition. Ignore them and make your mother's new bedroom where you want it to be. It sounds like the small first-floor bedroom is an ideal choice since she's used to being there when her personal needs are being handled. She'll enjoy her view of her porcelain doll collection and if she's still speaking and/or comprehending speech you and she can share memories of each doll's meaning. It sounds like you've been through a lot already and are entering a more difficult period with your mother. Don't make it harder by depriving yourself of a private sanctuary of your own, your living room. Best wishes. Beth in SC

Saribet---Holding on to some degree of normalicy can help us find the strength to go on. I suggest that you spend some of time in the room you are considering to get an idea of what your sisters are referring to. If you think the room is acceptable, tell them that you did before you moved the hospital bed there.

There is another potential plus for not putting the hospital bed in the living room. As long as your mother is partially mobile...She would probably enjoy spending time in a different room.

Things change and you and your mother's needs may change also. If you can move the bed once, you can do it again.

HI Saribet,

It looks like your fellow community members gave you some great tips and advice.

Always remember, that you are not only caring for your mom full time but you are also caring for yourself. It can be so difficult to juggle your mom's needs, your needs, and your families’ requests.

Your mom's care needs are changing, and it is great you have recognized this and are seeing to it that care changes are made. I am wondering if it is possible to talk with your sisters more about your thoughts with moving your mom to the room you would prefer. It may help to bring up the importance of your own safety and comfort in all of this to your sisters. If possible it may help to let them know what distress this is causing you.

One reason the bedroom may be best at this point, is that it still leaves room for a change in environment when your mom can move around and get out of bed. Changing rooms, even just a little bit may help with stimulation. With the living room still acting as a living room- your mom could leave the bedroom and enter the new environment of the living room. Also, if you use your living space when your mom is asleep you would loss this space if she were to use it as her bedroom. Again, you are very important, your health and sanity all factor in on this decision.

I know it may be difficult to re-move your mom if one room does not work out. But, it may help to try out one room like a trial run. For example the living room- you could let your sisters know that you are testing the living room option out this week while your mom is on the lazy boy. Let them know how you feel about her in that room for sleeping and if it works out. Or even if you wish to set up the bed in the living room for the test run- see how it is, if you like it, if your mom is comfortable, etc. If it doesn’t work you have reason to change it.

I am very worried for your level of distress at this time. I hope you call our helpline this weekend or when you can, and talk to one of our counselors more about what is going on. There is a lot going on - not only with the changes to the living situation, but with your mom's progression and your place in all of this as well. Call and talk to us 800-272-3900

Bests wishes,

Thank you all for your sensitive feedback to this problem. Of course, tears came to my eyes for receiving such affirmation and acknowledgement.

Fact is, I am going to put the bed in the living room, momentarily, and will spend a couple of weeks going through Mom's possessions, throwing out, or boxing them. I will make the room pretty for her. It is small, but her bed and a night stand and her commode will fit in there just fine.

I am not going to quarrel with them and find myself defending my decision. It is my home, and I am her sole caregiver (other than the home attendants.)

I will try to tell them gently what I have decided, but I will be telling, not asking.

Jaimie, your suggesting I call the helpline made me emotional. I was already ready to call them for additional input. It is amazing that such a seemingly simple and logical solution to this problem could cause so much dissent.

Thank you. I'll come back if and when I need to, to report what happened.

Hi Saribet.
I can only add that perhaps, after making your own decision, which is undoubtedly the best one, you could think about acknowledging to your sisters how hard it must be for them to think about the changes your mom is going when they are far away, that people at a distance often feel helpless. Even when their advice is not helpful, they are probably just trying to take care of mom at a distance.
After corresponding with you for a year in rambling musings, I know that you are a deeply thoughtful and compassionate woman and have thought about their feelings all along, how hard it is for all of you with your mom declining. Just verbalizing one of those "goes without saying" statements can make all the difference. It can also be the straw that nearly breaks the caregiver's back.. meaning, if we have to care about one more person or take care of one more person...........

Do as you feel is right for you and for your mom. I hope someday, if I need to be cared for, my sons will be as thougthful and compassionate are you are for your beloved mom.

Namaste.

Of course, tears came to my eyes...
sometimes we read and type through the tears.
Yeah ....what they said.
I was the caregiver having the hard time getting my sisters and mom to see that there maybe a problem that needed to be diagnosed.All I wanted was for her to go to her Doctor,so he could decide.After all,she sounded just fine over the telephone.So please,If you are the other sister or brother living out of town or out of touch be very supportive of the caregiver. Now that one of my sister's is the caregiver I say Do what you feel is right.I will give my opinion but you are living with her and I am not.If I thought that my Mom was abused or neglected I would have to take over again.I trust this will not happen in my case.So I feel blessed to have my Mom taken care of by my sister.I have done it. I realize how hard it can be.If she said I am putting Mom in the living room. I might say Oh No not the living room. But she would say Oh Yes the living room and I would say okay,hope she likes it.You have all the work all the stress all the 36 hour days all the 8 day weeks you do what you think is best. If nothing else you deserve that and a Thank You and some big HUGS! Marcus

Well, guys, for now, Mom's bed is in the living room. We had to do so much rearranging she is totally lost, confused, and discombobulated.

My heart aches because she cannot speak, so she cannot even express her anguish and fear except through the look on her face and the cast of her eyes. I read her face and talk to her, telling her over and over that we brought the bed down because she can't use the stairs. I explained I will make her a new bedroom in the little room off the living room. But I have no idea if she likes the idea or not. She is too confused right now.

She's not feeling well anyway. She is recuperating from pneumonia and a UTI infection after a 5-day stint in the hospital. She seems so out of it that I wonder if the UTI has reasserted itself. As you might know, there is no way to tell except for the altered state.

She is usually jovial and expresses happiness and delight at the roses I take from her garden and put around the living room, at the characters in cartoons, at the people in movies. She is hardly interactive and has not been so for two days.

I will keep watch and if need be, revisit the ER with her. Ugh. She'll be catheterized because she can't give a urine sample in the usual way, and being cathed is really bad for UTIs. It could push the bacteria up her ureters, or so I hear, and compromise her kidneys.

Ugh. I'm rambling. Thanx for listening. Any and all feedback is appreciated.

You are the head honcho in your home so tell the siblings to buzz off.You don't need that stress on top of everything else...Sorry to be so blunt but they don't do the caregiving you do.......

Thanx Snowy!

So far, she looks like a classic hypnotized person most of the time with the new living room set-up. Sometimes in the middle of it, she smiles, but it is unnerving to see her this way.

Getting her into bed was difficult, as the bed is against the wall and she can't move into the center of it and so on and so on and so on . . . but my consolation is it is temporary. That is all I can tell myself.

In the little bedroom, the bed will be centered and the home attendants and I can center her properly and accommodate the pillows between her legs, etc.

Can't wait!

T.V. time, chilling out time.

Jaimie et al. Just thought I'd let you know I did call the Association, and then had a therapy session at 42 Street to come to terms with this issue, as well as my stepdad's death which is still haunting me, terrifying me.

Thank you all for being there. I will come back more often. I have trouble asking for help but I will try . . .

Saribet - yes, you do have some good input here on the message board. Bottom line, this is your decision and your home. I do know how you feel about your sisters because I have one that lives about four hours away. She gives advise but never visits or helps. It is a lonely feeling. Anyway, I put my Mom in a bedroom after trying to decide where she should go...as she does not walk as she once did and has ALZ. With that said, Mom is very happy in her small but own space and can come out whenever she wants to. Sometimes my anxiety steps in and takes over too but I have to remind myself that Mom is well taken care of and I can make the adult decisions with her well being in mind. Good luck to you.