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 caregiving alone...when is it time for nursing home? 
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Joined: Tue Jan 29, 2013 10:52 pm
Posts: 4
Post caregiving alone...when is it time for nursing home?
My mother is 91 years old with LBD...she can barely stand and walk at this point. She has delusions and is fearful there are people in the house. She sleeps for a day, then is agitated and upset for 24 straight hours, then she has a short period where she is lucid and more like her old self. She has depression (she's on Celexa) and takes a mild water pill.
I would like to know if there are any others out there who are care giving full time without any help?
Mom's finances are such that there is no way we can afford $22 an hour for home health aide. She had short coverage through Medicare with a weekly 45 minute visit from a Physical Therapist and a quick weekly visit from a nurse. They also provided a once weekly visit from a bath aide for 4 weeks.
I am here 24 hours a day, 7 days a week. Once a week I pay a friend to sit with mom while I make a mad dash to the grocery store. The entire time I am gone mom cries and is terrified. I am getting very little sleep (which is very hard because I already have a sleep disorder). I moved a twin bed into moms room so I can jump up when she tries to get out of bed. She is a fall risk and has fallen several times, but she is extremely healthy so far with no bone breaks.
I am completely exhausted.
Yesterday afternoon I just fell asleep in my clothes on my bed. I woke up to mom trying to crawl across the end of her bed.
Physically, I do not know how much longer I can take care of her. I had chest pain last night. I now have neuropathy in my feet, but can't even take the time to go to the doctor.
I have tried to get volunteer help through the Area on Aging...but they say mom makes just a little too much money through her spousal VA benefits and her social security.
I want to do the right thing by her. I have lived with her and taken care of her for 5 years now. She has gone extremely downhill over the last 6 months.
At what point do you put your parent in a nursing home?


Sat Feb 02, 2013 8:56 am
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Joined: Tue Jan 29, 2013 10:52 pm
Posts: 4
Post Re: caregiving alone...when is it time for nursing home?
In the 10 minutes it took to type this, Mom went from snoring in her bed to standing at the end of it screaming...took all my strength to get her back into her bed.
I feel like I just need to sit in her room and never leave it. (I have a baby monitor...but she is pretty silent when getting up out of the bed until she starts yelling). I have not been able to take a shower or bath in over 2 weeks because I'm terrified she will get out of the bed. I am doing sponge baths and washing my hair in the sink when I can.


Sat Feb 02, 2013 9:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: caregiving alone...when is it time for nursing home?
I think you know the answer but I certainly can empathize with your struggle. When you're a 24/7 sole caregiver, you get into a kind of zone of unreality where you no longer trust your own feelings or judgment. While I had hoped desperately that I could keep my husband at home, it became impossible, physically, mentally and emotionally. As an RN I had the knowledge and skill but not the endurance to meet the many demands of Lewy. I have no regrets for placement. I visit every day and take a big part in his care. You will still be in charge of your LO's care! And it's a big job but at least you can go home and get a good night's sleep. :P

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Feb 02, 2013 11:04 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: caregiving alone...when is it time for nursing home?
I hope you will forgive me for being rather blunt. Think about whether your mother would have wanted you to live like this. If you continue to wear yourself out as a caregiver, what good will you be to her? I don't see how you can continue this for very long and would suggest that you at least start checking out local nursing homes so that you can begin to plan. Placing our LOs in a NH is never our preference, but it certainly can be a necessity. I know, having placed my mother three years ago this month.

As Pat said, you probably already know the answer to your question.

Julianne


Sat Feb 02, 2013 12:38 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: caregiving alone...when is it time for nursing home?
I think you have been given some great advice already and I am not going to repeat it but the question I always ask a person when they come to the cross road you are now on, Are you capable of giving Mom the care she so rightly deserves and from that asnswer you will know what to do ! And you deserve a life a life too !

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Irene Selak


Sat Feb 02, 2013 7:05 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: caregiving alone...when is it time for nursing home?
oh my heart goes out to you... you need to think about you, a bit.. its not selfish at all.. i know its a hard concept...who but who will take care of your mom if you get sick.. and keep this up and you will.. if you arent already.. i hear your cry for help...

two things.. you mention va benefits.. can the va help..??? its amazing the things they have available.. its just finding out about them and getting it to work for you.. certainly worth a look... if her husband had some benefits there is always a chance ,she might too...

and another thing an attorney told me years ago,,,

that dont feel quilty for putting loved ones in a nursing home... you can spend every waking hour there, with them if you want.. but at least you will go home and get a full nights sleep and your time together.. will then be so much better, when you are together.. you will be much more patient and alert and calm..

i hope the ideas on here will hep you an you can find the help you need before you end up i the hospital.. you have certainly been a good daughter and done more than you can do.. its ok to get some help..

wishing you luck and strength... with your decisions
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Feb 02, 2013 7:14 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: caregiving alone...when is it time for nursing home?
I have often thought if my wife would be better off in a NH or a care home. But I've been told they would not take her because of the balance problem. She needs someone near her 24/7 and every minute when awake. The cognition prevents her from telling what she really needs but I can understand when she needs a potty call. Since being on a antibiotic she is having very loose stools. Now she is on a daily antibiotic because of so many UTI's. Will the loose stolls continue? My wife knows who I am most of the time. She will tell me almost every afternoon that she loves me and I don't kow how much she loves me, she always asks me please do not ever leave her she appreciates what I do for her more then I will ever know. How could you place someone in a home when she says that? I have to walk next to her all the time as she is a very big fall risk. When and if it gets to that point, does anyone know of a place in or near Dumfries Virginia I could contact? I love her so much I can't even dream of putting her in a home. I will feel so guilty.


Sat Feb 02, 2013 7:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: caregiving alone...when is it time for nursing home?
Mac, you may by physically able to care for your wife and it sounds like she has a sweet disposition and may not be as combative and difficult as some of our spouses are. I admire your sentiments very much. I also love my husband tremendously and am with him every day--sometimes he knows me, sometimes he doesn't. He doesn't know I've put him in a 'home' but it's what I had to do to survive.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Feb 02, 2013 7:44 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 118
Location: Dumfries Va
Post Re: caregiving alone...when is it time for nursing home?
Mockturtle. Thank you and I don't mean to imply that anyone else does not suffer from having to do this. Where is a goo source of information for finding a good place in Virginia (Northern) ?? Thanks


Sat Feb 02, 2013 7:51 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: caregiving alone...when is it time for nursing home?
I can't help you with Virginia but once you see what's out there and what payment systems they take [this is VERY important!] you can visit a few. It's never too early in the game to make plans. Dementia care facilities often have a waiting list. The good thing about nursing homes vs. assisted living facilities, etc. is that they will usually take Medicaid--at least a certain percentage of Medicaid patient--where some ALFs do not. And if you are admitted initially as an out-of-pocket or insurance-paid resident they are more apt to keep you when you have to go to Medicaid. Some dementia care facilities--especially if they are part of a 'tiered facility'--will not keep a resident once they are not mobile. They then send them to a nursing facility.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Feb 02, 2013 8:07 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: caregiving alone...when is it time for nursing home?
The best place to help make decisions on homes is to contact people locally , office of aging, Alzheimers that are local, local support groups. That is where the answers will be !
Good Luck !

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Irene Selak


Sat Feb 02, 2013 10:23 pm
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Joined: Tue Jan 29, 2013 10:52 pm
Posts: 4
Post Re: caregiving alone...when is it time for nursing home?
thank you for your replies. I really appreciate your input.
Part of my problem is my two daughters do not want me to put my mother in a nursing home. She was in for 2 weeks for rehab after a bad fall and they thought I was a horrible person for doing that to my mother (I was there every day with her). The doctor at the ER and her doctor said she needed skilled nursing care at the time of her fall since she could not stand on her own.
Since she has been out of the nursing home she has gone even more downhill with her dementia.
My daughters have not been with mom. They do not take care of her or visit. I told my youngest daughter yesterday that mom was much worse and I was thinking about the nursing home for her. She told me "If she can't stand, then get her a smaller wheel chair to move her around so you can get through the bathroom door"..."if she has problems with getting on the portable toilet, then use a bedpan...you just roll her onto her side"..."and if you can't lift her, then get a electric lift for her"....I just got off the phone and burst into tears. She also said I needed to give her "medical power of attorney" and she would get things done for mom...like I haven't been to every agency, like I haven't taken care of every bill, every aspect of mom's life for 5 years.
Neither one of them asks "how are you doing mom?" I have dropped 45 pounds over the past year from stress and am skin and bones. I know my health is failing fast.
They make me feel like an utter failure.
Mac...mom tells me how much she appreciates me helping her when she is lucid. She also has developed from a loving, sweet lady into someone who yells at me or starts screaming at the top of her lungs when the phone rings. She is terrified all the time because she is convinced there are people hiding in her house that are going to kill her. She hallucinates all the time..she sees people on the ceiling or next to her bed. She is a huge fall risk...and you can't leave her alone for more than 2 minutes because she will try to get up and walk. I know that she loves me. She has always been a wonderful mother, that is why I take care of her. But I also know that I can't keep doing this and not sleeping. I am on day 3 of 2 hours of sleep every 24. I am sitting on my twin bed in her room on my lap top. I used to sit at the kitchen table. But I can't risk that anymore.
I just feel so horribly lost right now.


Sun Feb 03, 2013 2:03 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: caregiving alone...when is it time for nursing home?
You love her and she loves you. You will be giving her your best when you are your best. You need the extra support and cannot get it as your situation is right now. One of my daughters was the opposite, mad at me because I kept her Dad at home. Several times, I had myself in a position where I had to find someone to stay with Ted while I went to the ER with the youngest. At one point, when Ted wasn't even so bad, I took him with me when she broke her foot. He ended up pacing around and approaching another man in the waiting room, almost accosting him and starting a fight because he was delusional. It was so difficult. I also lost sleep and weight because of the stress. I finally was persuaded to place Ted in a nursing home--it broke my heart. But, I am able to visit every day. He has a routine. I have sleep. I have gained weight. We have had wonderful visits with the children. I have also seen where I would have hurt myself even more had I not had the assistance of the staff/CNA's, etc at the nursing home. Believe me, I had the wheelchairs, the renovated bathroom, the ramps, the hospital bed, the hospice assistance at home, the extra home aids for help with the house, family, friends, and I STILL was unable to handle it. I am facing several health issues still and hope everything turns out ok for me. I still have to be watchful for Ted's care (because I still love him and miss him terribly and he will always be my wonderful husband). Take care of yourself and be safe for her BECAUSE you love her. You DO know best. So many of our friends and family supported me when I finally made the tough decision. They were surprised I waited as long as I did. Hugs to you.


Sun Feb 03, 2013 9:43 am
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Joined: Tue Jan 29, 2013 10:52 pm
Posts: 4
Post Re: caregiving alone...when is it time for nursing home?
thanks so much for your insight jean...it really helped!!
I know it is time, and I know it's impossible for me to do this on my own any longer. I will be working this week on contacting her doctor and nursing homes in the area. I have visited a few, need to visit two more. Thank goodness I have a friend who will come and sit with mom for a couple of hours so I can go check them out.
Just spent the past 24 hours sick with a sore throat and exhaustion...but still was up every hour through the evening and night with mom. She thinks I am her sister right now and thinks she is in her childhood home, so at least she is not agitated!


Mon Feb 04, 2013 8:27 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: caregiving alone...when is it time for nursing home?
Dear Dcopp,

I think you have to do best for the 2 people involved at the moment and it sounds to me that is your Mom and you.I know we all want to please everyone but that is impossible and no matter what we sometimes do to some it is wrong, so with that being said and you having a difficult time dealing with all of this might just be the time for placement, doesn't mean your job ends as your mom still needs a wrong advocate. Good Luck !

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Irene Selak


Wed Feb 06, 2013 2:50 pm
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