Caregiving resources for every stage of the disease.
RSS Feed Print
Bedtime Dilemma - Seeking Guidance
Daughter of a Marine
Posted: Tuesday, September 12, 2017 10:41 AM
Joined: 9/11/2017
Posts: 20


I have just discovered this site and am so grateful for the opportunity to connect with others who are walking in my shoes.  4 months ago, we placed my 89 yr old dad in a nursing home, something we swore we would never do. But in addition to his dementia, extreme sundowning (screaming, reliving painful childhood memories, etc.) he is also  severely limited physically - cannot walk or see to his bathroom needs - cannot push the button to call for help and his words are unintelligible.  We cannot afford in-home help since he is a 2-person assist.  Mom is 82 and I live 40 min away.  He needs care 24/7 which we simply cannot afford.  Our dilemma is that we are reluctant to leave him at bedtime - Mom is with him every day, all day - gets there at about 10 am and stays until I or one of my kids relieves her at 6pm.  We have hired someone to be with him from 6-8pm 3 nights/week, but we cover the other 4 and it's become exhausting, especially for mom.  He seems to recognize us for the most part but does have times when his eyes seem vacant.  He cries which breaks my heart and at those times, believes Mom is actually his mother and he asks why she didn't do anything to protect him when his father was beating him.  Has anyone else experienced this and do you ever get to the point when you allow yourself to not be there all the time?  It would be so much easier if he wasn't aware of what's happening but the other day he asked mom why she doesn't live with him any more.  His sadness is heartbreaking - seems all we do is cry. Any suggestions or insights would be much appreciated.
jfkoc
Posted: Tuesday, September 12, 2017 11:07 AM
Joined: 12/4/2011
Posts: 13254


I have no insight to share and unfortunately what you are facing is not unusual. When a person needs 24/7 that's that. Sometimes the need can be fulfilled, sometimes not. It is heartbreaking. 

Is you father getting any calming meds? Have you thought about Hospice? Please do not think that you call them right before someone dies. They are a lot more help than that. They can do an evaluation and possible give you some treatment hints.

Your father is in a nursing home not memory care? The staff will likely have little to no training in non-medical treatment in the nursing home and perhaps very little in MC.

Please give your mother a hug from me. I too sat with a husband...


Daughter of a Marine
Posted: Tuesday, September 12, 2017 9:56 PM
Joined: 9/11/2017
Posts: 20


Thank you so much for your thoughts.  We have been trying to get dad into hospice but seems it's not that easy to qualify.  He is being given Ativan and Resperitol (sp?) for his agitation and the latter has increased his appetite considerably - prior to this he was barely eating anything.  Down to 134 lbs at 5'10" tall (not sure what he weighs now that he's been eating).  We are struggling to get a dr (was recently seen by a geriatric psychiatrist due to his extreme sundowning, shouting, combativeness) to give a diagnosis that will qualify him for hospice.  Saw another geriatric psych for another family member who suggested a diagnosis of vascular Alzheimer's, mixed dementia (I may not have that exactly correct).  I suggested it to the geriatric psych who saw dad and am still awaiting confirmation that he's been accepted by hospice. It has been incredibly frustrating - can't seem to get anyone to hear us.  Any suggestions you may have would be very much appreciated.  

I'm so sorry to hear about your experience with your husband and your loss - I never realized what a painful journey it is to watch a LO slip away an inch at a time, and to have to fight the system while dealing with the emotional impact of this evil disease.  


Gene9999
Posted: Tuesday, September 12, 2017 10:08 PM
Joined: 8/18/2017
Posts: 31


Your moniker indicates your dad may be a Marine.  Did he retire from the Marines?  Does he have any VA established disability?  If either of the above, you may be able to get some help from the VA - talk to the Veteran Experience Office (patient advocate) at your nearest VA hospital. If the VA can help, they may be able to get him an appointment to see a qualified psychiatrist or sociologist sooner than civilians would.

You may also want to contact the State Veterans Service Office or the VFW or Foreign Legion.  They may not be able to help, but may also be able to do something or can refer you to someone who can. 

One more thing - to calm him at bedtime, try playing a recording of Taps.  Its not just for funerals.  Taps was/is also played at the end of the day, at bedtime, so to speak - it won't hurt to try it.


Tink4495
Posted: Tuesday, September 12, 2017 10:12 PM
Joined: 5/2/2014
Posts: 575


Hi there,

Welcome to the boards. I am so sorry you all are going through this horrible journey. You have come to the right place for support and advice.

jfkoc is right, it sounds like your father may need memory care instead of a nursing home. Most nursing homes do not have staff that is properly trained to deal with dementia. I would request a hospice evaluation, based on what you listed, it sounds like he should qualify. In the mean time, ask the staff physician for an evaluation and request an anti-depressant. My mother took Zoloft and this helped with the crying. Validating his feelings is also important. YouTube has great videos by Naomi Feil and Teepa Snow. 

You and your mom need some respite, it is so important to take care of yourselves as well. This is a horrible disease and it is so hard on everyone involved. Please don't feel like you have to be there all the time and as hard as it is, don't feel guilty for taking a break. Make the most of your time when you are with him and continue to let him know how much he is loved and that you will always be there for him.

Thank you to your father for his service. Hang in there, you are not alone. Take deep breaths and one day at a time.

From one daughter (of a WWII Navy Veteran) to another


Daughter of a Marine
Posted: Wednesday, September 13, 2017 9:59 PM
Joined: 9/11/2017
Posts: 20


I can't tell you how much your response means - Dad is a very proud Marine but he saw no wartime service (1947-1950) and for that reason, does not qualify for many benefits. He did receive some physical therapy at the VA center after his stroke, but doesn't qualify for residential benefits.  I will definitely try playing TAPS - worth a try.  What I find most painful are the times he asks Mom why she isn't living with him any more and when he asks me where I'm going to sleep - it would be easier if he were not aware of the changes to his life since he can no longer be cared for at home.  He can't walk or in any way assist with his care.  His speech is primarily unintelligible so we try to be there every day, but the geriatric psychiatrist and social worker today told mom that family is there too much and may be "stimulating" him too much.  We have never walked this road before and have no idea how to do this.  Just want him to know he's not alone and that he is loved (though he told Mom last week that she has left him all alone and tells her he would never have done that to her - talk about heartbreaking). 

His diagnosis should qualify him for hospice but we can't get any information on that status. Just don't know why getting this information should be so difficult.  

Can anyone help us understand the distinction between nursing homes and memory care?  He has just been approved for Medicaid but are not at all happy with his current nursing home situation.  Would a memory care facility accept Medicaid? Any information on this would be much appreciated.  Thank you!

 


Daughter of a Marine
Posted: Wednesday, September 13, 2017 10:01 PM
Joined: 9/11/2017
Posts: 20


Tink, please thank your precious loved one for his service as well!
Daughter of a Marine
Posted: Wednesday, September 13, 2017 10:21 PM
Joined: 9/11/2017
Posts: 20


Tink, please thank your precious loved one for his service as well! His unselfish service is so appreciated.  

 


 
× Close Menu