Trying to decide what is the best interest of my mom

NinaKaz

Hi!  

I am my mom's caregiver and POA.  I am an only child and I have been handling all of her needs on my own (my husband is supportive) for 4 years.  Today I got a call from my uncle who suggested I move her closer to him in assisted living.  He has worked at the assisted living place and it is a clean place that has nice people. Her other sister and other brother are also moving into that area as well.  

I admit it has been overwhelming and I struggle with self-care.  I am doing the best I can. 

My question is how do I weigh the pros and cons of her moving versus staying compared to what is in the best interest of her?

My concerns is that she will think I am abandoning her.  She would be involved in the decision to move.  Her cognitive function has diminished lately, so that is another concern if she can think of long term effects of moving again.

I trust my uncle to make sure she is safe and her needs are being met.  Her sister would also do the same.  I do think it would be go for her, cognitively and socially for her to be around her sisters and brothers.  

I feel selfish thinking of what I need (I'm in graduate school, currently in internship with one child in college and one child in high school).  My husband is very supportive.  

I want to do right by her since she always thought of me first growing up.

Your input would be greatly appreciated. Thanks for listening.--N

Quilting brings calm

I do not see a downside to you jumping at this opportunity to give your mom quality and quantity time with her siblings. In a facility  geared toward her needs and in the company of family that she is familiar with.  And who can assist in keeping her emotionally comfortable. 

I think you are hesitating because you feel guilty about how much life will be better for you daily if she goes.  It’s a win - win.  Take the win, 

LovingAwareness

I empathize, having recently struggled with this decision for my Dad. He moved to memory care two weeks ago. I can only give you my experience and that of my Dad, realizing that everyone is different. If your Mom is still appropriate for assisted living she is probably not as severe as my Dad is.   

First, don't feel selfish about considering what you need. it is a family decision and your needs count too. Your Mom would want the best for you, just as you want the best for her. This could go on for years ahead. If you are in graduate school you are going places in life. Mom probably wouldn't want to be what holds you back. 

My Dad is doing so well in his dedicated memory care home and adjusting so well and fast, better than I had even dared hope. Things are so simple for him in his new home. He could no longer participate in his old life or the complexities of living in his own house among neurotypical people who were trying to work and be his caregivers. It was too much for him and was dragging him down and stressing him out. He was sleeping through the day and up at night. Then there were the increasing balance and safety concerns of living in a home with stairs. It was getting scary. Now he is on a simple, normal daily schedule. I won't say he is thriving - he has Alzheimer's and is getting worse - but he is more relaxed and calm.

We visited daily for the first week, then started gradually scaling back to every other day, and this week I am back at work and have not been to see him since Monday. I'm going tomorrow. My brother visited him earlier today and reported that he was happy, engaged in a game of chair balloon volleyball, and his room was clean and well-stocked with Depends. He said he had eaten a good breakfast and he asked my brother, "How is the family?" - the kind of stock question somebody would ask a friend or acquaintance - that leads me to believe he has pretty much forgotten who my brother is, who I am, and where he used to live for 47 years. That's okay. I accept that he is no longer as dependent on me and I am no longer his one and only and losing my close relationship with him - the bottom line is that he is better off where he is now.

The first day was rough- he paced around his room and called me a "liar." He said, "You got what you wanted." (Which was true - I did want a break from him. I was so burned out that I almost quit my job in January.) I felt it was the reaction I had so dreaded and it was upsetting. But when I went back the next morning, he was more relaxed than I had seen him in ages and he didn't remember anything about the previous day or his house. One day he told me that he had tried to "get the train back to Virginia" that morning - meaning he had been thinking about getting home. If I visit for too long, I feel him starting to reattach to me, so I'm learning to keep the visits shorter. 

Will you be able to visit your Mom? You trust your Uncle and her sisters. Are the finances going to allow it for the open-ended commitment? Is assisted living right for her or does she need memory care - what does her doctor think? Or, if she is progressing, will she need that higher level soon? The place your uncle is suggesting might be nice, but will it serve her needs as she progresses, or will she need to move again? If the assisted living place has a memory care unit, would she be "stuck on the third floor" and what is the quality of care specific to that unit? The place where we have our Dad is dedicated to memory care, with all staff trained specifically in memory care, and I'm not sure this move would have gone as well for our Dad if we had moved him to the "attic" of the Sunrise down the street, which we were considering for convenience. I was thinking I could visit every day. So glad now that we found a better fit for him a little further away. Nothing against Sunrise, but this is advice we got from Dad's memory daycare - to look for dedicated memory care. The other residents are along the same lines of functioning, some slightly better and more conversant and self-motivating, but many quite a bit worse/non-verbal and non-mobile. Some are on hospice. Dad will probably be able to stay there for the rest of his life. He is still walking, but two weeks after moving in he still can't find his room. We probably could have moved him there sooner and given him a better chance of learning to function there - we're glad now that we didn't wait longer.

When we were considering this, the thing we kept saying was, "I don't want to wait until something bad happens." 

It's so hard, either way. Maybe take your time, maybe look at alternatives, don't rush into the first thing you see, even though your Uncle speaks highly of it. How familiar is he with dementia, specifically? Just because it is convenient doesn't mean it is the best place for her. Maybe you can visit and see it with your Mom. Get a sense of how it goes reconnecting with her relatives too - her relationship with them might not resume where it was last time she was in close contact with them, because she has changed. 

King Boo

Where is she now?

If she is at home, or in your home - this could be a good opportunity for you to move her to a positive placement with other supportive family.

If she is in a facility near you - pause before you disrupt her care if you are satisfied.

Other questions to ask:

1.  Would I be better placing her in a facility near me?  From experience, I can tell you it is very difficult to moniter care and make life and death decisions from a distance.

2. How savy is your Uncle?  Can he be an advocate?  How old is your Uncle?  If he is elderly, this might give me pause.

3.  Is there a Memory Care affiliated?  Because most pwd who move to AL are there for a very short, short time because of accelerated needs.  By the time most people with dementia are placed due to care needs, the assisted living ship has sailed and it is time for Memory Care.

4.  Does my Certified Elder Law Attorney (CELA) www.nelf.org think this will impact her Medicaid eligibility when she spends down?  How many years of care do we have?

In a nutshell - as DPOA, I would place her near you so you don't exchange one form of stress for another.

Unless Uncle is a healthy, capable, younger powerhouse of a care advocate.  Otherwise you are going to move things out of your control and possibly create more stress.

CaregiverSis

Hello, I'm new here. So, please let me know if I'm posting incorrectly, or not following rule here. 

My sister with Down Syndrome and Alzheimer's lives with me. Alz is common with Downs. Anyone else dealing with this combination? 

She is refusing to eat and getting very irritated with just about everything. These two behaviors are new, only about two weeks. 

I'm looking for ideas to encourage eating and calm her down.

Thanks.

CaregiverSis

It is a blessing that your mom is still able to discuss it with you. Maybe consider involving her siblings in the discussion. Then if you all decide it's a good idea to move, there's no reason to feel guilty. 

On the other hand, there is the distance and the age of your aunt & uncle and there ability/willingness to handle things. If that's all good, add one to the pro side. 

Siblings have memories to share and more time to do it than you do at this time in your life.

It's a hard decision but it's great that you have family support. It sounds like you don't have to make this decision on your own. 

I don't think that what you're considering is selfish and something to feel guilty about. It sounds like you have your mom's best interest at heart. 

Guild is very common among caregivers, but don't let it steal your precious energy. It sounds like you have a lot of good things going on.

My mom is 92 and if I had that opportunity, I would take it. She is living on her own now, with a lot of help from family. Assisted living would be a godsend, but she can't afford it. 

Take care.

Quilting brings calm

Caregiversis

In answer to your question about how to start your own question, scroll up to the top of any thread and select the green button add POST.  That will open a window for you to enter a subject line and then your question etc.  That way you get comments that specifically relate  to you rather than intermingled with comments for someone else’s questions. 

Tfreedz

Caregiversis, I agree please start your own thread you will get lots more replies

. I am also caring for my brother who has Downs. He does not have Alzheimer’s but I do know it is very common. My brother is very set in his ways and I find that music really calms him. Does your sister go to a day program at all, if not is that something you can look into? My brother only wants to eat the same things over and over again which can be very annoying but sometimes if I give him a choice of 2 different items he will picks one and eat it. I also notice my brother who is 48 prefers soft foods, yogurts, pudding, jello. Will your sis drink her meals? Maybe an ensure or meal replacement drink to help get her some nutrition. 

 Also search Down syndrome in the forum and you will see many posts even from years ago that are very helpful, I believe I saw one that gave info on a Chicago based support group that specializes in dementia/Alzheimer Downs individuals.