I am so sorry for your loss, @esobay. So good that you and your brother were able to be there for her and for each other.
We have a family friend who promised my mother years ago that he’d do her funeral mass. We ended up with a service and communion at the funeral home.
Hours were spent going through photos to find good ones for large collages, as well as for a video tribute. We chose music to be played before the service; mom had eclectic tastes - religious, spiritual, a showtune or two, 60’s pop.
So very sorry esobay. Consolation in knowing that your mom is at peace. I have preplanned my mother and my aunt’s final arrangements with the funeral home. They will contact the church and the cemetery and pay the offering to the church. I chose the hymns, flowers, dresses.
Some of my friends and other family members, whose relatives were not affiliated with a religious congregation, arranged for a celebration of life gathering at places that were meaningful to loved ones. I attended gatherings in parks, restaurants, a library, and even a yarn shop! Most of them were informal, with a small table or easel holding photos, a poster, or items that the deceased cherished. At the yarn shop, there were favorite crochet items and crochet hooks, favorite books and reading glasses at the library, a sunhat and sunglasses at the park. Some had a small floral table arrangement. Most had family members speak, sing and in one instance dance. Some read poems, sang hymns and prayed. There were light snacks at most, those at restaurants were brunch style.
MIL lives in Florida in her own condo which she likes, however, it’s on second floor and she has trouble getting up and down the stairs, BUT, she can still do it. She drives still, she can grocery shop, she can make it to church, she reads some, watches TV. Here’s what she can not do due to her mild schizophrenia. She has no friends. She tolerates acquaintances, and the public for short periods of time. She has disconnected from local nieces, step sisters. She has limited contact with church members, priest. She reads only the bible and watches religious TV. She has a horrible diet. She walks the mall on occasion for exercise. She will not see a doctor, she does not take any medication, and thinks God is her Doctor. So she has not been seen for anything medical in 55 yrs. She will go to the dentist. She regularly says she wants to come live with her only son, my husband, but in past few years travel to Massachusetts where we live, has proved too taxing to fly alone. And once here, she is spent, and after 3 days looks forward to going home. So we’ve taken to going to her. If my husband goes alone to FL he stays with her, but it’s taxing on him because she is extremely frustrating both in lack of conversation, quick to anger, and depression. Hurricane Irma gave her her latest breakdown. Loss of power for 4 days forced her to go on her own to her nieces for AC and power up her cell phone and she stayed there till my husband could arrive. He flew down immediately. Once there her power was back on in 1 day and she moved back into her condo. Once home there was no more talk of moving to MA. She settled back into life.
So the big question is this: We are faced with a few scenario’s
Reasons to uproot her and move her to our town in her own place.
Move her here permanently so emergencies can be handled easier.
Move her here so that she does not become a burden on local family in FL.
Move her here so that we can navigate living arrangements in our locale.
Reason’s to Leave her in Florida
It’s familiar, and the weather is more conducive to allow for mobility outside her condo.
She is difficult to have a relationship with, so having her that far away allows for us to visit her when we want as opposed to her being able to come by at her will.
She is a Florida resident so we’d have easier time in case of emergency getting her services.
IF we moved her here, I would only agree to having her come for a month in the winter and have a trial run of what it would be like to for all parties concerned. Seniors are housebound in the winter, she would not take advantage of senior center, so she would be housebound. She does not know how to drive in snow, she hate cold, etc. And biggest concern is how much of a drain on our life she would be due to her mental illness.
IF we keep her in Florida, we should consider moving her to a first floor apartment to make life easier on her getting in and out. She currently resides in a 55+ community.
If we keep her in Florida, we need to hire a Geriatric Care Company to oversee her health, living conditions, etc. Whether she’ll go along with that is iffy.
Regardless of where she lives, we need to get P.O.A. and Guardianship.
@fullmom - you make a stronger case for her staying in FL. Moving her to a first floor apt is a good idea - if she will agree. If she does not, then you have done what you can. Same thing about hiring a Geriatric Care Co - if she resists, then that’s it. Seems wrong to force an elderly adult into a situation that they don’t want. Even if it would be better for her - it’s still her life and she should have some say. You will want to have some say in your life when you get old.
Thanks everyone. I gave up trying to get everything done instantly. Got the preacher, the church, a local contact to get food and my hotel AND got a date that worked for brother and 9 grandkids. Didn’t work exactly for me, DH and I had to cancel a conference we had planned to attend, but not a biggie. The rest can wait. Wish my brother would help pick out headstone and decide when we will bury her ashes (NOT doing it as part of the ceremony). So I am off to tend DH and a medical procedure for him. Focus on living and the living…
@Fullmom, I’d get the POA instantly if not sooner. My experience with guardianship is that if you have the POA (AND she won’t contest it), that is all you should need. If she will cancel the POA; that is when you need the guardianship. I was worried about Mom’s exhandyman influencing her to give him a POA over mine. So I got the guardianship which there was some potential she would fight, but thank goodness she didn’t. Helped that she was lucid enough to know that she sort of (desperately) needed it and that she trusted me. But then once I got it, she couldn’t fight it and change her mind, which is easily done with a POA. (ps don’t forget medical as well as financial POA). The guardianship is expensive to keep going ($1000 worth of attorney fees every year to file guardian reports to courts, plus the reports (accounting for every penny and every bit of worth) is then public record. A treasurer trove for disordered cousin to bother me. So if she has assets, I would go with the POA and put anything of value into a trust with a trustee.
I can’t speak to moving her or not. I left Mom 400 miles away from us; I had to go up every 4 to 6 weeks to check on her. At first I had to go to clean up financials and grandma’s house, etc etc. Then it was just better for my marriage that she was at arm’s length. I called on the phone every day and that was enough for me to not feel very guilty.
Moving often causes some big crisis with elderly people, too. Maybe your family can pick their crisis time, but if she is in a pretty good 55+ my inclination would be to leave her there. Moving won’t fix her lack of friends and all that. More talking with local family is the direction I would go. But YMMV!
@fullmom I would make the decision on what is best for you and your husband. If you have POA and guardianship, it is really hard to make decisions from a distance. Her FL family may be supportive, but they have no obligation and can’t make important decisions. I found you have to see and experience your elder in order to see what is going on and making the right decisions. This is especially true for those who don’t really socialize with others much, such as my parents despite living in a CCRC. A Geriatric Care Company can’t really make decisions for you. I found even 35 minutes away to be a burden as I was the only backup!
But, if it is easier for your family to keep her in FL, managing from afar may be the best solution. Her behaviors seem nothing new, she seems to be able to make her own decisions, and I wouldn’t change anything that has been a life-long pattern. I don’t think you can go wrong by keeping her in FL for now, just remember, the plan may need to be modified at any time. I went from making a decision to keep my parents at their CCRC to moving them to a family care home in a 2 week period of time as their circumstances dictated. Caring for elders requires constant vigilance!
@veruca other posters have referred to it as board and care. In our area, it’s considered an assisted living option and also called a “personal care home” but it’s not very common. The director tells me it’s a common model of care in the Pacific Northwest. She is from Seattle. The home my parents are at has room for 6 people, 1 semi-private room and 4 private rooms. I pay a monthly fee. They get 3 meals a day and a 1:3 staff to resident ratio. Activities aren’t as structured but they have things around to do and I went by today and a resident’s SIL was playing guitar and doing a sing along. It’s on a quiet street for walks. They are working hard to manage dad’s behaviors so he can stay there with my mom. I think we finally have him on the right combination of medications to treat his agitation and episodic delirium. It’s nice for me as it’s a mile away from my house.
I found the suggestions under visiting homes helpful because there were things I wouldn’t have thought of, such as visit places on a weekend or evening, eat a meal, ask for copies of minutes for residents’ council meetings.
The online article also has numerous links to resources, such as “The National Long-Term Care Ombudsman Resource Center,” which in turn has other links.
@veruca The price I am paying is more than what I would pay a large assisted living. But, large assisted living would not be able to manage my father at this time.
Thanks-I understand. My Mom is on her own with the occasional helper right now. I am wondering about the future and trying to think on it now. I don’t think she can afford assisted living.
It is really tough when the elder doesn’t have financial resources.
I think my dad is dying. In the last 6 months, he has progressed through stage 4-6 dementia and is now at stage 6-7 depending on the moment you see him. His decline in the last month has been precipitous. Of course, we moved my parents 3 weeks ago. But the rapid decline was already evident before the move and it was what prompted a move to happen ASAP. Yes, he was checked for a UTI.
In the last week, the personal care home (board and care) has finally been able to get him on the right medications to control his agitation, episodic delirium, and get him and therefore my mom some sleep at night. Besides those medications, he is on no others. He now has a cough and I suspect pneumonia. The rapid decline in mental status was evident well before the cough and I think a symptom (I think aspiration pneumonia) of the dementia and maybe a side effect of the medications. The medications are necessary as the home tried really hard to manage him with behavioral interventions. I know my dad’s wishes and he would not want to be kept alive in his present state. He is not, with his present medications uncomfortable or agitated. I’ve asked for no antibiotics unless it will help his mental status (such as a UTI) and if he had an infection that could spread to the community and I’ve asked for a hospice consult. I will not allow him to be hospitalized unless it was best for my mom.
I admit, I thought I was clear in my mind about the antibiotic treatment. But, I find myself morally conflicted. I strengthen my resolve when I think about my dad’s wishes which we have talked about at length when he was competent. My mom is unable to make decisions. His rapid decline is stressful for her as she has no memory and is not aware of his trajectory of illness (clear stage 5 dementia). Every hour and every day this is new to her. But, the emotional presence of each other is important to them both.
Am I making a reasonable decision of no medical interventions, even antibiotics, besides comfort care?
I think one of the most loving things you can do for someone is to let them go. Antibiotics seem like they would probably just delay something that is going to happen soon ether way.
This practice of throwing everything we have at a dying person to get just a little more time is an American thing. Other countries don’t do it and don’t seem to feel like it is necessary to do it. I think our culture does a poor job of letting go and making us feel like the bad guy if we allow nature to take it course.
My Dad died in the hospital after 6 months of in and out of the hospital. He was a huge gardener and loved his house. I seriously regret that he didn’t get to go peacefully at home instead of in the hospital after having numerous procedures. My Mom was totally unprepared for his death. He was 78 with serious heart issues, but it had never been mentioned to her. I regret how we handled it and how we communicated with her. I think we were all afraid to mention it and assumed the doctors had.
@GTalum, (((((hugs!))))) I had a similar decision to to make with my dad. Not exactly the same, but I had to come to grips with the knowledge that declining intervention would lead to his death. Although, again, I knew that this was his wish, it was a very difficult and lonely time for me. I was thinking about that, and how hard it must be for you to deal with this without your late brother.
@GTalum - I had to make exactly this decision for my dad. He was not agitated, but like most in these circumstances had trouble swallowing and constant risk of aspiration. I knew his wishes. Years ago the director of his memory care unit shared an article about treatment and outcomes of pneumonia in advanced dementia cases. It validates your inclinations towards what is right for your father. Treatment seems to buy little time and no quality, as a general rule. For my father, I knew that it was postponing the inevitable and putting him through a fight for nothing. Contacting hospice will help put the decision in context, clarify if and how assumptions apply to your father, and add to his comfort if needed. He is lucky to have your support. Hang in there. My father was kept comfortable.
It is very hard to make this decision. Your dad’s presence comforts your mom, but nobody knows what would happen if he is no longer there so it doesn’t seem to make sense to worry about it overmuch. With regard to antibiotics, I agree that you are right to take the community’s well-being into consideration but the choice of what to do if his illness is not communicable is tougher. The hospice consult is a great idea - they will have practical ideas and suggestions and may be able to help you with palliative care options if necessary.