My mother will transition to a long term care facility (nursing home) next weekend. I have been preparing her for this transition for the past few weeks. In a nutshell, she is outliving her money. She has been residing in an ALF for the past year at $6,200 per month, plus Medigap insurance premiums; life insurance premiums; medication costs; hygiene supplies, and incidentals. We have limited resources available now, and the ALF recommended we find a LTC facility before she actually runs out of money, so we will have more options and have her settled in before we have to apply for Medical Assistance. So she moves into the new facility on May 16. She has multiple disabilities from a brain aneurysm that ruptured 24 years ago, and she is wheelchair bound and overweight. She lived with me for a few years until it became more difficult for me to caregiver, and she transitioned to an ALF. However, she fell and broke her hip, which essentially caused more disabilities and lack of mobility. She needs 24/7 assistance now. Anyway, to make a long story short, I am feeling very sad and guilty that I have to make this difficult but necessary decision to move her to a long term care facility. We have no other option due to the fact that she is running out of savings, and now, her limited income (social security and my father's pension) will go toward paying for her nursing home, and Medical Assistance will pay the remaining fees and all other expenses. My father is deceased, and my mother and he divorced in 2010. How does one cope with the sadness and guilt for placing a parent in a nursing home? My mother is not happy with this decision. She protests that she does not want to have a roommate (there is no other option); and that she will not have her own bathroom in her room. She has dementia but is cognizant enough to understand what is happening. Her mood is generally labile (she has what is called "pseudo-bulbar affect from the stroke), so she can be negative and depressed; crying one day, and happy go lucky the next. It is very difficult to see her unhappy. Today I visited her for Mother's Day, and she was not happy. She is grieving the loss of my brother who died from pancreatic cancer in January; and another brother died a few years ago after complications from a spinal cord injury. She is grieving these losses, in addition to the lack of control over her life at this stage. She told my sister in law and me today that she does not have anything to live for, and she does not care about anything anymore. She is being treated for depression and anxiety with medications, and a psychiatrist visits her monthly. I am her POA, but I am at my wit's end trying to make decisions that will help her cope with these losses and her own aging process. Any suggestions from others who are in a similar situation? Thanks!
razzleberry probably never had to deal with lost income because he or she could still perform their job as a cartel lookout while elder caregiving at home .
that statement still isnt as thoughtless as telling someone they should writhe in guilt over something thats beyond their capabilities or even medically unwise ..
i look at NH as long term hospitalization for many worst case patients .
Let me say it in black and white: I don't know where I would be without this site. I rely on it every day!
Thank you for your comments, suggestions, support, and sharing experiences. My mother will transition to her nursing home facility on May 16, and tonight I spoke with my last remaining brother to give him an update and try to enlist his help in moving her. He said, "I'll see what I can do...." In all honesty, the only brother who was supportive and helpful was the one who passed away from pancreatic cancer in January! So, you can imagine that I am still dealing with my own grief and trying to be supportive to my mother who is still grieving and had a tough Mother's Day. In any event, I am trying to stay positive especially when I am in my mother's presence. I am also trying to make this transition to nursing home as positive as possible, but it still feels challenging. I understand what Razleberry's comments; I have read the book, "Being Mortal" by Atul Gawande, physician from India, who describes his cultural philosophies for caring for the aged. I agree 100%, but in our U.S. culture, with most women caregiving elderly parents and launching children, and working full time, I believe that our approach to long term care needs to change. As I have been intimately acquainted with caregiving my mother and the "father" who raised me, I have learned a few lessons along the way. Prior to my parents' separation, I was actively assisting them whenever one of them was hospitalized or in some type of crisis. Since 2007, I have been caregiving my mother, two of those years in my own home. When she started falling frequently, and we were calling 911 to help us lift her off the floor; and dealing with incontinence and mood swings, we realized we needed to find an assisted living facility. Then, she fell and broke her hip, required surgery and rehabilitation; then developed a serious decubiti on her heel, there was no way we could attend to her physical needs. Now, she must transition to a nursing home because she is outliving her money! Her social security and my father's pension will pay for a portion of her nursing home bill, and Medical Assistance will pay the remainder. If I kept her living in my home with 24/7 care, it would cost me $18/hour x 24 hours per day x 365 days per year, or $146,000! I am not physically capable of providing this type of care; and I work full time outside the home. So, yes, every person's situation is different. I guess instead of using the word "guilt" to describe my feelings, I could replace this word with "grief" because of the loss of my mother's functional abilities; grief and loss from the death of my brother (her son); and sadness that my mother is suffering loneliness and loss of control over her life. loss of finances; and loss of quality of life. I pray that my mother's transition will be as positive as possible, and that she will find meaning in her elder years. She will see a psychiatric CRNP to manage her medications. With her dementia and mood swings and agitation, she is on Lamictal and Ativan for anxiety. I am taking care of myself; walking; yoga, monthly massage and acupuncture; and spirituality. Nonetheless, life is still hard sometimes, and I appreciate a forum like this to vent and get support from others who have been in the same situation. Thank you!
A depressed person feels so ALONE. Don't try to talk her out of her depression. Get on board with her sadness. She has plenty of reason to feel that way.
Hold her hand. Listen to what she says. Agree that her life looks dark. Tell her you miss your brother too. Agree that you are worried that her roommate may be a problem. Tell her you will always be there to fix what can be fixed. Sometimes, I will even catastrophize about how terrible things are. That can get a laugh. And maybe after a while of shared sorrow, then and only then, try to remind her of some of the good things that remain.
Let her be sad and let her know you love her, happy or sad. Staying in sadness with someone who loves you will help to lift you. Some people say that God doesn't solve our problems, but that he is beside us through them.
That appeases her for the moment.
Appeasing for the moment is HUGE! It is the name of the game at this historical juncture.
Telling the truth at this stage of the game is truly not playing by the rules. My mom just becomes agitated. And in five minutes she has forgotten the whole thing. So what is the point???
How many end-of-life elders have you cared for?????
Alone????
How many grown adults have you lifted out of bed??? Change diapers for? Bathed and redressed? Taken to the doctor?
We all want to hear about your experiences. Please fill us in!
I am very sorry to hear of the problems associated with your mother. Did you say she was on Hospice? Working with older Americans who have depression is difficult. So I have not told you anything you don't know.
In best-case scenario, a few things perhaps no one has told you. There are benefits available for older Americans. The organization paying for these resources is "The Older American Act". These funds are overseen by Agency on Aging (for the most part located under county supervision) and located in the Government phone listings in you phone book.
The above information aside I hear you saying you need to help your mother. A beginning is tom make this move more positive. Begin this by always having a positive spin on her move (this is not easy however doable). This move is complicated by loss of your brother, which for her is her baby. This may sound a bit foreign after all he was a grown man, right. The truth is he was her baby no matter the age or how death occurred. You can embrace this situation, by helping her make the most of what she has left. Taking the time to talk about the positives in his life without mentioning his death, only when she brings it up. An example, you go to see your mom and she is having a bad day. She is seeing her losses and nothing positive in her current life. You can bring positive thoughts into her bad moments. Take things to the Skilled Nursing Facility that she will remember with joy (bring the Activity Director for the facility to help out). Take copies of pictures (Only Copies), a particular bedspread or quilt (be sure to label it). Make her a scrapbook of significant events in her life that have a positive aspect to them. None of these examples are easy when you are weighted in the bog of Caregiving. These will have to be in the forefront of your visits until you have become to using them as tools.
You are a caregiver and need to have a support group to help YOU. While caregiving can be very rewarding, this is usually a couple of years down the road in looking back. Try very hard to keep a diary this will help you two fold, once for her and once for you.
"I feel guilty that I am placing my mom so I am going to __fill in the blank___"
The fill in the blank section is something that you come up with - perhaps there is another way you can give to your community or someone else in need in the amount that balances with the level of guilt you feel.
I was raised with a South American culture where we take care of our families, our parents, we do not place in a home. The American culture tells people here "do not feel guilt - it is okay" when it is really NOT okay (in my opinion) and perhaps NOT okay with you either since you feel guilt.
As the culture tells people it is okay not to feel guilt then guess what? In the long run no one will even think twice about placing anymore because culturally there will be no guilt associated with it. It is sad to me that this country is going in that direction.
So - in short - if you have done absolutely everything you can and you know that there is no more that you can give - then place and in turn figure out what you can do to "transfer" the guilt you have into giving back to your community. But don't tell yourself it is okay (in my opinion) that is just changing who you are at the core. It is okay to feel guilty as long as your do something with that guilt.
As others have mentioned, discuss her recent statements with her MD'S. I found it useful to write a note to give the doctor if it was going to be awkward to discuss in front of my Mom. Then he could ask her questons to get a better perspective. Perhaps a medication change can help.
You and others on the site dealing with this situation have my empathy and I hope your Mom is gradually able to adapt to her new "normal.' No one can adequately prepare you for this journey.
Take care of yourself, as the stress can affect your own health, as it has mine.
It know it is difficult but you shouldn't feel guilty for a decisions that has to be made.
I am also going through a tough time with my folks. However I will not feel guilty about any of it because that is an irrational emotion. I have done nothing wrong.
I have been and will continue to be a great daughter to them and their care.
They have lived a long and wonderful life and have little regrets.
I should be so lucky to be living in a wonderful ALF like they are with so many lovely people. And mostly to be so lucky to live into my 80s.
I feel badly for them at times but I have no guilt.
Please seek some professional help for yourself. You have been a wonderful daughter to oversee all this.
As it was put to me, we could either send her back and forth to a doctor who would tinker with her meds, in which case I, alone, would have to "diagnose" how she was doing (I didn't have the skills!!!!), or send her to the senior behavioral clinic where it would all be done under professional eyes in about ten days. Naturally, I opted for the clinic.
I was afraid to take her there myself--afraid of the clamour--so I let the AL manage the whole thing. I visited her once while she was there--with my knees knocking.
As I said, the result was a miracle! and with the insurance the whole ordeal only cost $1,000. Amazing.
Even if such a clinic is not available, a geriatric psychiatrist should see her. Or at the very least, make sure the Psyc. KNOWS WHAT YOU ARE TELLING US. Remember that demented people mask what is going on. He/she cannot know how it really is unless you report it. SPEAK TO THAT PERSON.
Salisbury's suggestion is spot on. Is your mother getting the best meds for condition and are levels prescribed adequate. Sometimes it is hard to tell a physician that her prescription is not working. But only you can be your mother's advocate.
The cost of care is an unbeliveably costly burden for most families. I can tell you feel guilty that you cannot do more. But you are not alone.
You are responsible for your own behavior and not your mother's, although I know that can be hard to really believe for yourself.
If you could find a therapist or a group for adult children in your situation, you are likely to find comfort in talking to others. Perhaps you need to check-in with your family doctor to see if they could prescribe a med to help in the short-term.
You must take care of yourself, both physically and mentally. If you don't exercise regularly, try going for a short walk a few times a week and gradually increase it. If you like crafts, try to find one you like. I have returned to knitting after 30 years. I find it takes my mind off my problems.
In closing, I bet many of us on this board have been in your place. You can only do so much and you cannot fix your mother at this stage. Best to you.
And it's not wrong to wish that mom would slip away. Watching a parent deteriorate is devastating. And it can last for years. Or decades.
Yes....there's only one way this can end. Don't beat yourself up because your brain does work properly.
In the meantime, take active measures to bolster your sanity. It won't "just happen." Lots of evidence of that on this thread. And in my own life.
Take care of yourself. Lots of good support on this forum. Keep reading and keep sharing.