Hi fellow caregivers, my first post here. My Mother has recently moved in with us. She has advanced COPD and has always been fiercely independent...she was in Hospice for several months in her own apartment, but was having a lot of difficulty keeping her medications straight and seems to be having symptoms of dementia...so after months of begging her to move in with us to no avail, we made the difficult decision to just go get her. I think she knew she needed help, so she grudgingly complied. I am so happy to have her here, she'd had a few falls, a broken hip, and was terribly overmedicated when she got here. But thanks to some wonderful Hospice nurses...I think we have made a lot of good progress! Her meds are on schedule...which has been a struggle. I realized early on that if I did not hide them from her...she was taking her "as needed" pain and anxiety meds all willy-nilly. She was very disoriented and unsteady when walking. Over the past 2 months I have seen so much improvement....just from taking her meds on a set schedule! But here's the bad part...she resents me for hiding the meds from her. She does not accept that she is having trouble keeping her days/months/hours straight. I think she feels I am being too controlling....because in all honesty I do lean a little that direction....but in this case, I think it is warranted! She is being prescribed heavy narcotics that need to be carefully managed. So my question is, how do you administer meds, while being respectful...yet at the same time not allowing her to do it? I literally have her meds under lock and key...and boy does she ever complain about it to anyone that will listen. It feels like we are constantly wrestling with this power struggle...when she is used to getting her way. And suddenly I am resisting. This is causing a lot of tension....and I wonder if others are going through this parent/child dynamic in reverse. And how they are coping? How do you say, Mom...I'll bring your meds at the proper time. Not before. And how do you help your Mom accept that dynamic? We have so much daily tension over this issue. Just wondering how others have worked though it. Thanks for any advice, in advance!
Nerve ablation
This is where they cauterize the nerve that where the pain signal travels. This is a day surgery under local anesthesia. Nerve may grow back or it may not work but there is no inherent danger in this procedure.
Gel injections
For knees and shoulders. Gel is injected into the joint by the orthopedist in a regular visit. No anesthesia required. When it works, it works great and lasts for months or longer. My mom (91) had this in both knees. It worked for a few months in one knee and is still working in the other knee, almost a year now. Also had it in her shoulder and that has worked a really long time now. She has been able to stop taking 600mg Tylenol every single day, which isn't good in the long run. I don't think she'd ever agree to take anything stronger (she's a retired RN).
SPRint PNS (neuromodulation therapy)
(From SPR Therapeutics). This is a very new therapy so not every orthopedist will be familiar with it. It is for knees, back (and I think) shoulders. Sort of works like a TENS unit but patient only needs to have the lead in for 30 days then gets permanent relief. 74% success rate, minimally invasive. It retrains your brain so that the pain signal goes somewhere else (that's as elementary of an explanation as I can give). Very safe and no downside if it doesn't work. https://www.sprtherapeutics.com
PRP Therapy
I also recently learned about this option (which I was told by my othopedist is NOT covered by insurance). Platelet rich plasma therapy. Basically they draw your own blood, separate out the platelets and reinject it back into the arthritic joints. Not sure how this takes care of pain but is has been around for a while apparently.
https://www.treatingpain.com/treatments/platelet-rich-plasma-prp-therapy-
I hope this info helps her and anyone else suffering with pain from arthritis and loss of cartilage!
I would vaguely blame 'new Pharmacy rules' for needing to lock the pain meds up at home. (Hospitals have to lock up the narcotics).
Of course, if you suspect Mother still has pain, even with improved routine, speak with the Hospice Nurse.
If your mom's only sticking point is medications can you give her her own Medication container but place "pills" like Tic-tac, Skittles, smarties and other candy that look like pills in the dispenser. She can administer those and you can administer the other ones. This might make her feel like she has a little bit of control.
If she questions it and why you are still giving her some tell her that one of the papers you signed for Hospice is an Opioid Agreement Contract that YOU will be the one to administer some of the medications.. This is a "rule" that Hospice made.
If this does not help it is simply a matter of just biting your tongue and saying that this is the way it is and walk away from any tirade she may have.
The combination of you being in control is an issue as is the distinct possibility of addiction at work is tough for her as well as you.
You are doing what is best for mom, that is all you can do.
I read your response to me again just now. You are grieving for the person that your mom once was. I did that too. It is incredibly hard watching a parent decline.
Seeing how she is wanting control is nerve wracking but you have to remember that she is adjusting to losing her independence. I saw this with my mom too.
Then, the issue with the meds. You may feel like a bully. You’re not. You are caring about her.
Do you have any idea as to how she was taking her meds? There is a way to detox if an addiction has taken place. If she has an addiction problem it will absolutely effect her behavior. Withdrawing will effect behavior.
If you aren’t familiar with these things you could miss the signs. Addiction is an illness.
Unfortunately, I have been around an addict (my brother who is now deceased) since I was 7 years old. I know the signs very well.
Hoping things will improve for you soon.
But ultimately it comes down to not everything can be fixed. Not everything can be perfect.
Sit with Mom and TALK. Tell her you recognize that this feels like a lack of control, but the truth is that she was not remembering, even though she felt she was, how to take her medications. That she now HAS to let you take that over for her. That you recognize it feels like a loss of control, and it IS, but that you recognize that, and how it makes her feel, and are so sorry for that. But it's how it has to be. Either you, or some MED NURSE at an ALF?
Just be as honest as you can and realize she is mourning the one thing we all require in life, control of our own "stuff". That is worth mourning, worth raging over. It is just that there is now no alternative to that.
It won't be easy. It may not even be resolved. And it sure is a wakeup call from any romantic vision of 24/7 care.
Welcome. You will have lots to contribute to others here as you "live and learn" in this situation. Just look on this period as "Reality Bites". Too bad there isn't one of those cat feeding dishes that automatically opens when it is feeding time--for pills for Mom.
What an insightful comment, with so many good points to meditate on. You have helped me better appreciate why she is being so difficult, and thinking that maybe I should not be taking her behavior so personally. I think I have had the romantic notion that this was going to be wonderful, being able to be there for my Mom when she needed me, that we were going to have all of this quality time together, etc. And while we do have some good moments I wouldn't trade for the world...we have also had a whole lot of bickering. A whole lot of not being able to please her no matter how hard I try. Of her not cooperating with her health care or behaving in her own best interest. So I think when I feel helpless and frustrated I'm going to try to look at the situation more from her perspective. Thanks for helping me to recognize that more fully.
I agree with the addiction thing. You may want to see if the Hospice Nurse is willing to tell a fib and tell Mom rules say that patient cannot give themselves their own meds. Family member needs to be in control to keep count. All meds have to be accounted for.
This could be the reason for her falls, overdosing on meds. My friend had this problem. Seemed perky one say and slurring her words the next day. She was found out of it on her apt floor. She also, at one point, broke her leg.
Yep, I started off hiding them in my closet, which she promptly found while I was in the other room vacuuming. So I ordered a med box with a lock on it, which seems to do the job but I think she finds it insulting. I do like your idea of blaming the nurses rules! : ) Thanks for the suggestion!
She had been on the pain and anxiety meds for months before she moved here...so I think you're right, that addiction is likely. When her Hospice transferred here, the nurse told me right away that she was overmedicated. She is just a tiny little woman of 104lbs, and her nurse said her pain meds seemed like way too much for her weight. And this was just her routine meds...not even taking into account how she thought it was fine to take her "as needed" meds on top of it, all day long. We'd actually tried to back her off of the anxiety meds, which are known to lead to falls with elderly people, and that did not go well at all. She made me call Hospice late at night for assistance, swearing that she was dying. The nurse told me, she wants the anxiety med. She's likely going through withdrawal, so at this point...it's probably too hard for her to come off of it in her frail condition..and recommended we leave it as is. But aside from the challenges with her meds...there is plenty more she complains about lol. But it is certainly one of her biggest gripes. Thanks for sharing your ideas!
I’m 65. My mom is now 95.
Mom lived with me for 15 years. When my father died in 2002 she remained in her own home.
In 2005 mom lost her home to Hurricane Katrina, plus her Parkinson’s disease was progressing so she moved in with us. I wanted to comfort her.
My mom is a perfectionist which made our situation quite challenging. It’s an adjustment for them and us.
They do want to parent us even though we are grown women. They want to hold onto their independence. Enforce boundaries.
My daughters were still at home when mom moved in so I had the ‘sandwich’ situation, raising my daughters and caregiver for my mom.
My daughters moved out and my husband and I had no alone time.
I became depressed, my anxiety was rising. I did more than my share with no help from my siblings.
I was worn out. Mom caused problems by complaining to my siblings because she didn’t get her way about everything.
It was decided it would be best if mom moved in with my brother and sister in law. She is now under hospice care.
Of course we have memories of their younger and healthy days. I do understand your struggle. Life can get complicated as a caregiver.
Thank you for sharing your experience. I can relate so much to your feelings of depression and anxiety, and feeling like you had no alone time with your husband. And while raising your daughters as well! As overwhelmed as I am in this situation with Mom, I can't imagine doing so while also raising children. I am glad that finally your brother stepped up to assist.
My brother was an addict. When he became sick with his liver disease he received hospice care.
He thought he could get more drugs (OxyContin) by telling the nurse that he dropped pills down his sink or crushed them by dropping them on the floor and stepping on them, all sorts of stuff. The nurse caught on to this fairly soon.
It doesn’t take long at all to become addicted to strong meds. Do you think this is a possibility?
I think that you need to be honest and speak openly with her hospice nurse about her situation. She can speak to the doctor in charge and they will advise you what to do.
Addiction is an illness. Addicts don’t just stop on their own. One of my neighbors became addicted after a back injury. It can happen to anyone if meds are taken often.
Thanks for the welcome! I do think that addiction is a strong possibility. It's just so out of character for my Mom...she's always been very conservative, hard working...That's what makes all of this so difficult, cause I'm still trying to deal with who she was...when she was mentally sharp, when she was in control...and now I'm having to ask her to let me manage her health care. Here I am, 55 yo, but she still wants to be the adult and takes offense at my interference. I will talk to her Hospice nurse about it, that is a great suggestion. Thank you!