Moving Mom(7)

FD3

Our 94-year-old mother was diagnosed with Alzheimer’s 6 ½ years ago.  She lives alone but we have caregivers who come 6 times a week for 4 hours a day.  We believe it may be time to move her into a memory care facility, but we know that she will be adamantly opposed to such a move.  Here is some additional background.

My sisters and I live 1,200 miles away and take turns visiting with Mom every 6-8 weeks.  We always make sure the freezer is filled with simple meals that mom can pop in the microwave.  The caregivers stock the refrigerator and put meals out daily, otherwise Mom’s diet would consist of instant oatmeal in the morning, coffee, cookies, ice cream and sweets throughout the day.  Taking her medication for anxiety and blood pressure is a daily battle.  We are fortunate if she takes her medicine 50% of the time.

Mom’s physical health is excellent, but her hearing, memory and personality have deteriorated significantly.  She has become very mean and uncooperative, throwing things and being physically aggressive with caregivers.  The caregivers are willing to assist with housecleaning, laundry, etc., but she refuses any help.  One caregiver must take her out for an hour, while another sneaks into the house to do laundry.  Mom’s short-term memory lasts only seconds and there are incontinence issues.  She refuses to even consider wearing Depends.  She has never been open to moving close to my sisters and me.  She believes she is maintaining her house, drives to the grocery store and church, and is perfectly capable of taking care of herself.  We took the car away when she was initially diagnosed with Alzheimer’s’ and every time we visit something at her house needs to be repaired.  Mom still recognizes my sisters and me, our spouses, and three family members who live close to her.  However, she does not recognize long time neighbors or photos of grandchildren and other family members anymore. 

Ideally, we want to move Mom to Texas so she will be close to us.  However, the last time we flew her here for the holidays she became physically ill because the flight was so stressful – even with one of us accompanying her.  She insisted that she needed to go back home immediately and did not understand that she had come to spend Christmas with us.  Whenever we take her in the car for more than a 20-minute drive, she becomes anxious and disoriented.  We know that she will resist the move and making travel arrangements either by car or plane adds a further complication to trying to get her settled in a memory care facility.

We are hopeful some of you will have any suggestions.  Thank you.

SusanB-dil

Hi FD3 - welcome to 'here', but sorry for the reason.

From what you are describing, she should not be living alone. It is past the point of just part-time caregivers, even though it sounds like you have some excellent folks. 

The added aggression and throwing things not being acceptable, meds may need to be tweaked, but need to make sure they are being taken properly. That in itself is a huge issue with a lot of our LO's. Not wanting to take meds, and craving sweets, is not uncommon.

Who has DPOA and HIPPA accesses for her? If these are not in place, that needs to be done yesterday. You and sisters are making sure bills get paid? Obviously, her living so far away is far from ideal. However, even though she will not 'like it', she really needs to be closer.  Start looking into MC near you.  Since she will need to move anyway, might as well make it just one time. 

Do use fiblets! For the MC move: "You will need to stay here for a while so your house can be worked on" For caregivers: "This person needs some extra hours in for certification, so you are helping her"

You can also check the 'solutions' tab above, and the 'Archives' for various topics.

[Deleted User]

The user and all related content has been deleted.

MN Chickadee

The most important piece here is whether one of you has power of attorney and legal documents are shored up. This is what would give you the power to do what needs to be done here and move her even if it is against her will. If it is not done, you may need to file for guardianship through the courts. In either case you might want to consult an elder law attorney (in her state) for guidance. If whatever is needed to spring the POA is in place and you are good to move on to the next step, then I would go stay with mom for a while. You need to have a relationship with her doctor to make this work. Schedule her an appointment, send information via email or letter ahead of time about what is going on at home, establish that relationship. She sounds like a candidate for some pharmaceutical interventions to alleviate the anxiety and aggression.  A geriatric psychiatrist is the best trained at this, but if that is not possible another dementia specialist or doctor may suffice. You will also want to rule out UTI, they can cause aggression and amped up behavior in a PWD and otherwise go without symptoms. Staying with her will also give you a sense of where she is truly at when you see what goes on during a 24/7 continuum and will help inform your choices when you choose a facility (and if proving her incapacity becomes necessary for legalities will help you convey where she is at.) 

Also google Anosognosia. She likely is to the point where her brain is compromised enough it can't recognize its own deficits.  By the middle stages most PWD think they are fine and managing life just fine and you are crazy to say otherwise so it's pointless to argue, it only makes them resent you. No amount of reasoning or logic will get through, you just have to find fibs and workarounds. 

As for moving someone long distance, it is hard but certainly can be done. Many here have done it. I would absolutely move her to where the POA is unless you plan to move to her area for the duration of her life. The long distance caregiving thing is so hard, even if they are in a long term care facility. There are still things to be done. There will be a time when the calls are constant, and there will be many times you need to get there fast, or meet the ambulance at the ER because she cannot share her medical history or advocate for herself.  So don't let the logistics of a move sway you off from what needs to happen. I would work with her doctor on a calming medication for the trip, and it should be tried ahead of time to make sure it has the desired effect. Most folks here advise against airline travel in these situations. The airlines have cracked down on behavior issues since people were so naughty during covid/masking. They are not necessarily going to be understanding of a PWD and their unexpected behavior. Once you are through security you are at the mercy of the situation and if she doesn't cooperate it could be really bad. Also the bathroom/incontinence issue would be a challenge on a plane. Unless you can afford to charter a private plane I personally would avoid air travel. If it were me I would find a way to drive with the proper medication for her anxiety. You will need multiple hands on deck to assist, perhaps rent a van or small RV or something roomy. I'd plan only one overnight at a hotel at most, and have enough people to take turns sleeping and driving to do it in as little time as possible with the breaks to stretch and move a bit. Maybe even drive straight through if possible; my DH is a night owl and we have done that on road trips where he does the 10 pm to 4 am shift while I sleep. Someone should always be assigned only to mom and her needs. One person on these boards who moved her dad long distance has written up her experience, I will try to find it. Long story medium she prepared quietly, shipping boxes of his things and sorting when he wasn't watching. She packed the car without him seeing, she had worked out with the doctor to find the right dosage of med to zone him out a bit, and off they went "for breakfast" and then kept on driving. You will need therapeutic fibs. She's coming for a short visit, for the holidays, until some repairs on her house are done, for your birthday, whatever will fly. Same with the move to facility. Hopefully with the right medication you can dial back the anxiety and the fibs will suffice this time.  The doctor wants you to stay here a while for that bad hip or to monitor your blood pressure, there is a problem at the house so you can stay here for a while etc. Eventually they start to forget it's new and forget the old way of life. The transition can be very difficult and is a process, but she should settle in with time. 

This is a very challenging situation but I hope you are able to find a solution. It's a marathon, not a sprint. Break it into pieces to start pecking away at each step. Good luck and keep us posted. 

FD3

Thanks SusanB-dil for confirming what we thought - our mother needs to be in MC.  We've had  the DPOA, HIPPA, and paying bills issues all covered for several years. But the big stumbling block for us is how to move her.  She believes her house is perfect and we can't get her to leave it for more than an hour or two at most.  We often discuss fiblets that will get her in a car for two days or a day-long trip by plane. Unfortunately, being away from her home creates enough anxiety to make her physically ill.  So far, we haven't found a silver bullet fiblet.  Our hope is someone that has faced similar issues has found one,

Regarding the move, once we find a place (which is in process) do we first take her to our home in Texas and after a few days take her to the MC?  Or do we take her directly from the car or plane to the MC without spending a few days in our home?  We were thing that spending time in our home close to people she knows for a few days would be best.

Again, thanks for your advice.

[Deleted User]

The user and all related content has been deleted.

FD3

MN Chickadee and Victoria2020 - Thank you for the great suggestions, encouragement, advice, and call to action.  You provided us with insightful information we can use to take the next steps on what I expect to be a long and winding road on this painful journey.