I recently received a phone call from a case manager I hired to help navigate us (me & my mom's husband) thru this awful alzheimer's journey we are on. She asked if I knew that my mom's husband (married 34 yrs) had placed her on hospice. I was shocked. When I spoke with him, I emphasized that I would like to be informed about decisions regarding my mom's care. He told me he had been thinking about it for a couple of weeks. Never once, mentioned it to case manager or myself. My mom has been part of my life for 60 years and I am just so frustrated and don't understand why he wouldn't think I would want to know. He just got defensive instead of offering an apology. I have been on board and involved with her care since the beginning. I guess I shouldn't be surprised. He placed her in a MCF in June which was a nightmare. I thought full time in home care would be a better option but I guess he felt differently. She was immediately placed in diapers, had multiple falls/transports to ER, exit seeking all the time, altercation with another resident, smacked the med tech, aspirated, given wrong medication and they just kept increasing seroquel. Her husband was also a trigger of agitation when he would visit as she would indicate she wanted to go home and he would simply reply, "you can't". Case manager recommended a move to a residential care facility where my mom would be in line of sight more with staff. There were only 3 residents and 2 caregivers. That lasted 10 days before they asked that she be moved. She was screaming and yelling "help me" pounding on her window at night, not sleeping at night and smacked both of the caregivers. She was also transported for a fall and it was discovered she had a UTI. Her husband moved her to another RCF and case manager had telehealth appt. with psychiatrist who placed her on risperidone. She has been less agitated and anxious. I just sometimes resent the fact that my mom chose this man to be her husband. I never really knew him until she became sick and I had to deal with him directly. She had complained to me about her husband for probably 20 years. He is passive aggressive with me and some of his text messages are unbelievable. I just hate dealing with him but I have to because he has POA. I also have 3 siblings who are not involved at all. I'm sorry for the long post and I guess I don't really have a question, but I just feel so alone through it all and don't know where to turn. I feel guilty that I just want it all to end.
It seems like it may be up to you to back off and try for a better relationship. If you ‘just want it all to end’ - your mother to die so that you don’t have to deal with him – you really need to think again.
Given that you do not have any agreement with/or apparently love for the man married to your Mom he may have felt afraid or hesitant to tell you of his choice for his wife, fearing either your wrath, resentment, argument, grief. If you don't speak to him to ask why he didn't tell you, you can't really know which.
Given that you seem not to be at peace with the idea that your mother may be close to the end of her life, and that treatment will only now prolong her suffering, it will be difficult for you to go through this. You might consider speaking with social workers involved with her hospice, or with clergy if you are a believer. You might also consider seeing a therapist to come to some acceptance about something you now can't change, and feel helpless to come to peace with. Licensed Social Workers trained in life transitions can work wonders to help us comb through our feelings of fear, grief, pain, resentment in end of life situations.
I am so sorry for all of the emotional pain. It is very clear you love your mother very much. There is little to be done at this point to form a relationship with your Mother's husband, who clearly you have not liked. And the fact that you feel torn in this situation will make it so hard. My heart goes out to you and I wish you the best. I hope for peace for your poor Mom.
If ur 60 than Mom and her husband are in their 80s? Sounds like Mom was a handful. Can you imagine an 80+ year old trying to deal with this? I am 72 and I wouldn't want to deal with this. He probably has had to change places because of her being aggressive. Homecare does not always work. CNAs are not equipped to handle an aggressive person. If they can, it comes with experience. They are not medically trained. By law can't even hand a client a pill. You are not in their home 24/7. You have no idea the stress that this man was under. Sleepless nights. Not knowing what she would do from one minute to the next. There is no rhyme or reason to Dementia. Its very unpredictable.
He "is" her husband and holds the cards. Seems Mom is doing well where she is. She is being cared for by professionals. Her needs will be met. You can now get rid of the manager. Seems her husband didn't want her input anyway. Her husband can now just visit and enjoy what time they have together. She wouldn't be where she is if others didn't feel this was the best place for her. There is criteria that has to be met to be admitted. You need to realize you have no control in this situation. You need to keep the lines open between u and him. Remember, the elderly do not like to be told what to do. They feel they have lived long enough to do what they want. If he has no children of his own, then be there for him. For some reason your Mom chose to stay with him. My MIL was passive-aggressive too but my FIL loved her.
PS, just a thought. What if it was you and your husband had POA, would you feel your Dad had a right to tell ur husband what to do and not do.
He might be totally fine with handing over the decision making to you.
I would never expect her to be cared for outside of a Memory Care ALF and with your mother's myriad of issues, I'm surprised you'd expect her to be cared for at home! I personally feel relieved that hospice accepted my mother into their program on Dec 21st because they offer another level of personal care for her at the ALF. She still has her regular Nurse Practitioner who sees her at least once a week, in ADDITION to the hospice nurses and CNAs who see her 3 or 4x a week. Placing a person under hospice care does not mean they are going to die in short order; just that extra care is on hand for them and comfort meds are also available should they be NEEDED. The hospice nurse calls me each time she sees my mother, and everything they do is run by me. I'm also glad my mother will no longer be schlepped back & forth to the ER where she's been given the bum's rush, in my opinion, and sent home without anything more than a blood test after arriving with chest pains. Since the EKG was ok in the ambulance, the ER had better things to worry about *ie: Covid patients* than a 95 year old elder. Thank God hospice nurses provide better care for her than an ER doctor every day of the week; that's been my experience so far. With your mom's husband having her POA, I guess he'd be the one the hospice nurse would call and I can understand how that would upset you.
I think we ALL lose when we have a loved one who's suffering from Alzheimers and dementia. We all suffer, we all cry, we all try our best to do SOMETHING to alleviate their angst and wind up failing, for the most part. I wonder if you aren't angry at the disease more so than at your mother's husband? I'm sorry you weren't given her POA, as you would like, but that responsibility isn't always a bed of roses either, trust me. I'm sorry you're going through such a difficult time with your mom and with her husband, and I hope you and he can get on the same page b/c I'm sure you both love her & have her best interest at heart. With AD, it's often hard to know WHAT to do for them. And with all of her agitated behavior, it's frightening and worrisome to witness all of that too. I get it. I listen to my mother insist on 'going home' all the time when she hasn't had a home since before my father died in 2011. "Going home" for people with dementia often refers more to a place in time rather than a brick and mortar building. We read all the time about elders who ARE living in their own homes who insist on 'going home' when riddled with AD & dementia. The whole scenario is just sad and confusing for all of us, in reality.
Sending you a hug and a prayer that this situation resolves itself to your satisfaction, and that you and your mom's husband can come to some sort of agreement where you can get along together, for everyone's sake. Adding more upset and angst to an already sad situation isn't a good thing. Perhaps he'd be agreeable to turning his POA over to you? You can always ask.
Best of luck.
I have a different suggestion. Call her hospice agency and leave a message with your name and call back phone number, and that pt. Ms Smith is your mother.
A social worker and a spiritual care person are part of the hospice team, and even if your mother and her spouse decline those visits, they can provide support to you. The level of information they share may be limited by HIPAA, and they will not pressure her husband to do what you want him to do.
Not sure of the way information flows from you to her spouse to the care manager and the director of the care home.
RCFEs (the term. in CA) want and need a patient to be on hospice for a couple of reasons - the ability to have a nurse and MD available 24/7 who can give guidance on the phone or Telehealth and give instruction; a nurse who visits weekly and reviews medications, orders what is needed, teaches how and when to use; nurse can order equipment and supplies for next day delivery; and a HHA who comes 1-2 times/week to give your mom a full bath and change the bed,
/order equipment and supplies. IF a RCFE resident is on hospice and is refusing meals, developing skin issues, losing weight, state regulations require them to send the resident for medical care. Another trip to ER is not in your mom's best interests.
Talk to the care manager about making a visit to the care home with you, or for her to tell you about how your mom is doing there. Or maybe do a video call from your mom in the care home to you.
As best as you can put aside the anger and hurt right now, that will help you focus on expressing love and affection to your mom. Nothing from the past can be fixed or changed, now.