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Had to put my mom in a home and feeling guilty
Luis
Posted: Tuesday, December 20, 2011 12:57 PM
Joined: 12/20/2011
Posts: 12


Hi, I am new to the group.  My mom has dementia and lately she has become more disoriented, confused, and having short term memory issues.  In addition, her eye sight and walking are worse.  For the last few weeks it was a battle getting her to eat and she became more withdrawn.  Eventually, I had her admitted to the hospital where they treated her for dehydration and some malnutrition.  She was living with us, but my wife and I both work and it has become difficult to provide her with the level of care she needs.  So I put her in a skilled nursing facility when she was released from the hospital a few days ago.  Of course, I am feeling guilty about it, specially right now when she is so disoriented and keeps asking when she will be able to go home.  i know I can't care for her, but as a Latino there is the cultural baggage and expectation of caring for family members at home.  I am still paying the care giver to visit her at the home and I am going to see her after work, but with the holidays coming it is hard.  This morning the nurse called me because she was agitated and screaming for them to get her up from the bed and asked if the could put a belt on her to keep her from getting up by herself.  At home she would get up from bed by herself and use the restroom, etc.  I am worried that the nursing facility will just keep her in bed and that she will decline further.

 

I am curious if any of you out there have placed someone in a skilled nursing facility and how you helped manage the care.  Is there anything I need to do to make sure they keep her stimulated, etc?  Things to watch for?

 

Thanks,

 

Luis


sbenjamin
Posted: Tuesday, December 20, 2011 2:04 PM
Joined: 12/15/2011
Posts: 29


Luis,

So glad you have found us!!!  you will find a lot of help here.  This board is a migration from the existing Alz. Asso. board.  I will provide a link-there are many others there to assist and you can use a 'search' feature to look back on posts and see how others have dealt with similar situations.  It is a WEALTH of information about Alzheimers and dementia, and all the things that come along with it.  

 

http://alzheimers.infopop.cc/eve/forums/a/frm/f/214102241

I recently placed my dad in a secure ALF ( Assisted Living Facility).  This was after the very difficult decision I made to put him in the geriatric psychiatric ward for medical observation, medication adjustment, evaluation and comprehensive testing.  It is very hard to do this with your LO (Loved One) and my heart goes out to you.  You did the right thing by getting your mom some help.  Whether or not this is her final placement...maybe or maybe not.  But getting help and keeping her safe is the most important thing.  I know you love her a lot to do these difficult things for her.

It is normal to feel guilty, and it is normal for your LO to be disoriented.  Also very normal for them to want to go "home" which you will realize means to them a comfort level where their world was intact, not actually a physical place.   

Her agitation should be monitered by by the nursing staff and doctors.  Was her medication addressed during her hospital stay?  Also I don't understand why they are trying to restrain her if she is able to get up and about.  How long has this person been her caregiver?  What do they say about this?  

They should absolutely be providing activities and stimulation.  If there are things that you know she will like, you should continue to get her to do them as long as she can.  But the environment she is in should be providing these things to her as well.  

If you go and check out the other board, you will see there has been recent discussion about cultural norms in regard to caring for a LO at home vs. a ALF or SNF (Skilled Nursing Facility).  I encourage you to come there, copy and paste your post.  

There are many there who are much more adept and better trained at these things than I am.  You will find much help there (as I did!!!) to help you through these difficult times.  There are no pat answers, but help and guidance and a community who is living through these things too.  If it had not been for that board, I would not have had the courage to step up and do what was right for my dad, which was to admit that although I love him very much, my love and keeping him with me was not the best thing for him. Getting him the best treatment possible from a group of doctors and then getting him in a secure environment was.  I am eternally grateful for the advice and kind ears I found there.

sbenjamin


Luis
Posted: Tuesday, December 20, 2011 2:46 PM
Joined: 12/20/2011
Posts: 12


Thank you for the advice.  I just posted on the other one.  My mom is new at the skilled nursing facility, so they are not familiar with her.  She does not see well and gets disoriented and uses a walker to walk, so I think they are worried about her taking a fall.  I am hoping that once she is more settled she will get more activities, etc. They just switched her medications from Aracept to Amenda (sp?) because they thought Aracept was affecting her appetite.  They also gave her some sedation last night to help her sleep, but sometimes that affects her confusion.

 

Luis


sbenjamin
Posted: Tuesday, December 20, 2011 3:22 PM
Joined: 12/15/2011
Posts: 29


Luis, 

I see your post on the other board, and people suggesting that you come here!!!  Many apologies if I have created confusion.  This move to the new board is hard for us all...please bear with us!

 

There was a discussion of sorts not long ago on the different cultural expectations in regard to taking care of our LO's.  Let me see if I can find it.

 

Still Tryin' started the thread (she and her mom are of Italian decent) and posted about it in the thread you started.  If you don't see it, I will repost the link here.  The title of the thread is "The Woman Who Cried Wolf" if the link doens't work, may be able to copy and paste.

 

http://alzheimers.infopop.cc/eve/forums/a/tpc/f/214102241/m/9314014118

 

Also, have you noticed that there is a message board here in Spanish?  It might give you some cultural insight as well.  But I think that guilt, born of the love we have for those close to us that suffer from Alz. and dementia in wherever we are in our journey  knows no borders.  

 

Keep us posted on your mom and you,

 

Susan


pdecur
Posted: Tuesday, December 20, 2011 5:05 PM
Joined: 12/1/2011
Posts: 81


Luis

 

I had to make the same decision last week.  Mom couldn't stand or walk and I was having trouble feeding her.  Even though we gone to the ER twice no one would admit her.  Finally early on a Monday morning she doing her usual yelling and screaming so I told my Dad we are taking her to the ER.  There they gave her medicine to calm down and held her until the social worker came in.  Then they put her in the nursing home across the street from the hospital.  They have taken her off a lot of her meds and she seems to be getting used to being there.  The first week was hard cause she was still yelling and screaming and upsetting other residents.  So the director came up with a plan that if she starts yelling staff will take her into their office and sit with her.  She doesn't yell as much but today she had a little upset so they took her into the laundry room.  After awhile Mom told the lady she didn't want to do laundry anymore so she went back to her room.

 

At least there she will receive OT, PT, and speech.

 

Trust me you did the right thing.  I go out two or three times a day to check on her and make sure the staff is doing what they are supposed to.

 

As my Sister keeps reminding me there she will be well taken of and is safe.


SadinHeart
Posted: Tuesday, December 20, 2011 5:58 PM
Joined: 12/15/2011
Posts: 403


Hi Luis, being latina myself I can relate to the guilt you are feeling. We were raised to take care of our parents the same way our mom stopped working and took care of us instead of putting us in daycare. But, this is a different world. It's hard for any family to live on one income only. My parents understood that so they both bought long term insurance and kept telling us that was for their nursing home days.

 

My father died last April and my mom is now in stage 7. For dad we hired a private caregiver to take care of him at home. It was easier to do that because mom was there. Since they live in South Florida I was able to find people that did inhome care. My mom decided she did not want to stay home with a caregiver, she wanted the social contacts an ALF would give, but unfortunately after dad passed away her condition declined a lot and she was not able to enjoy the ALF as much.

 

I had brought her to an ALF close to me, but she stopped understanding english, so I decided to take her back to South Florida where she can be in the latin community. We found a nice small home ALF that only has 14 residents and 4 staff members. She is now able to eat latin food and communicate with people in spanish.

 

It is also different in that they make the effort to get the person interested instead of keeping them in bed all day. Also, they are bathing her every day, in nursing homes and large ALF's they bathe them 1 or 2 times a week. For us that is unheard of. So far I am very happy to have made this move. My mom is declining fast so I dont know how much longer she has to live, when my dad was in the stage she is now he only lasted 4 more months. But at least she is among her culture and enjoying that delicious arroz con picadillo y frijoles negros.

 

Dont feel guilty, it is part of life. I am sure your mom would understand if she could. I will tell you one thing my cousin told me. The most important thing is that she is well cared for when you are not around. If you can answer yes to that question,. then feel proud that you are doing the best you can for your mom. It is very hard to care for someone at home. You will read the frustration that many people on this board live with every day for making that decision.


Marjk
Posted: Tuesday, December 20, 2011 7:12 PM
Joined: 11/29/2011
Posts: 799


Unfortunately that guilty feeling is part of the deal with this disease.  I think each and every one of us has had it, and it stays a bit.  BUT.............we get to that point when we realize we made the right decision.  This is about safety for our LO.  Placing my mother was one of the hardest things I ever had to do.  She went directly from a hospital to a home, three homes to be exact (she got kicked out of 2 - long story).  My mother has something in her care home that she did not have at home, and that is a social life.  She is actually socializing with others.  She is having a quality to her life.

 

Try to think of all the positives about placement, NOT the negatives.  You will see that there are many things that you should patting yourself on the back for, not feeling guilty.

 

That being said, I wish I would take my own advice and kick myself in the butt each time I get that out of control guilty feeling.

 

Welcome to the boards!



Luis
Posted: Tuesday, December 20, 2011 9:08 PM
Joined: 12/20/2011
Posts: 12


Thanks to everyone for the advice.  I just got back from visiting mom at the home.  She had been agitated on and off during the day, so they are going to do some psych consult to see how they can adjust her medications.  She is still weak, a bit confused, and the more time I spent with her the more I realized that it would be difficult to do it at home.  It is sad to see her deteriorate, but I can only do so much at home.  There are a few other spanish speakers there, including other Cubans, which is nice....unfortunately she has had a hard time engaging with them.  I will keep at it...and hopefully she will adapt.

 

Luiis


bela
Posted: Tuesday, December 20, 2011 11:37 PM
Joined: 12/15/2011
Posts: 4105


I placed my mom on December 4 2009.  It was my worst Christmas ever.  I felt awful and guilty and sad and and and.  The nursing staff loves my mom so they chat with her, but that alone is not enough stimulation.  There is an activity person but some of the activities don't word for Alzheimer's patients.  So, after much practice of trial and error (I have been laid off) I go see my mom 2x a day and take her out alot. I chat with her continually, sing, watch movies, take naps and so on.  I stimulate her in ways no nursing home can do.  I will say however, that when I do return my mom to the nursing home; place her in a wheel chair (they don't want her fallings so she is in that) she takes right off down the halls.  So she has grown accustomed (sp) to the place aka her new home.  The nice thing about a nursing facility is they get their meds and 3 square meals a day and usu snacks.  I was, like you, working full time. I had a caregiver watching mom during the day and she was highly stimulated then.  I would rush home from work and the caregiver would leave.  I'd prepare dinner and all the bedtime stuff, medications, teeth brushing.  You know the drill, then I'd fall exhausted into bed.  On my days off I'd have to get up at 6 a.m. to give meds.  Mom would fall right back to sleep.  I'd sleep for a few hours.  Had to do the entire day of caregiving.  Then Monday would come.  I was burning out fast.  That is why I place my mom.  It will take time for her to adjust and for you as well.  Just see her as often as you can and take her out doing things you think she would like.  Make a list of things to do.  Even if you only take her out on week-ends it will be the stimulation you want.  This is all very difficult.  I have my sanity back and now I'm thinking of bringing mom home again if I could just afford not to work. Best of luck in whatever you do.