New here, need some advice please

sarahruth

Hi all. So glad I found this site with so many people in the same situation. Sorry for the Long Post. My dear mother has been diagnosed with Alzheimer's and Vascular Dementia. She lives in the UK and I live in the US with my husband and furry friends, emigrated here 25 years ago. My mother lives alone, I have a sister who has basically nothing to do with us. My Father, even though they are divorced has been amazing and very helpful with everything - he lives 10 mins away from her. When I was finally allowed to visit the UK after Covid - I was shocked at the state she was in. I spent 6 weeks in the UK, going to Dr's to get a formal diagnosis and trying to get her home help etc. I have applied to be her POA in Health and Finances. Two days after I left back to the US, my mother fell and broke her hip. She has been in hospital ever since which tbh has been a blessing since I know she is safe and her situation of living alone has come to the forefront now with social workers involved etc. In the UK Healthcare is somewhat different. Her social worker is trying to find her In Home Care but in the interim she will be put into a nursing home until they find her available Carers. My mother wants to pack up everything and move to the US with me. I want to be with her BUT there are major hoops to get her here Legally plus the cost of Healthcare here for her as well as Carers along with everything else. She has her own house in the UK and will get a lot of benefits if she stays there. I want to be with her now until the end. I am so torn on bringing her here or moving back to the UK just myself to care for her. I have a life here and don't want to leave and she LOVES it here and is fixated on moving here but the reality is we do not have enough money to support her here. I hate that this comes down to money but she is not a US Citizen so is entitled to nothing. Which makes me think I should move back to the UK to be with her even though we both want to be in the US. I am so torn. The guilt of leaving her alone in the UK is way too much. She is very dependent on me. Should I pack up and go and live with her? Or bring her here? I am absolutely lost on what to do. My husband supports whatever I do, he is amazing. Thoughts anyone? Thank you.

Tfreedz

So very sorry for the predicament you’re in!! This is also so difficult without the extra layer of different countries, services being involved. 

When my mom was diagnosed with dementia and at the hospital she insisted the only place she would go was to her home. I almost talked my husband into allowing me to move into her home (which is only 30mins away) to care for her. I was letting my love,sadness and guilt cloud my own family priorities! IMO, You should not give up your life,home,husband to live with your mom in the UK. As I was reminded, this disease could last several years and then what will be left for you to go back to? Not to mention your own health and well-being. I would suggest letting the UK social worker and your father figure out a temporary care solution for your mom there while you explore if there is anyway you could legally and financially move her to a MC near you in the states. I hope there is a way for you to do that but it will take time, legal advice and patience. I ended up bringing my mom to my home and now wish I had her go straight from hospital to MC because I have to much guilt to move her now. Perhaps you can do as much legwork here to sort out a great place for your mom in the UK and do FaceTime visits (set up by staff) with your mom on a regular basis. I know it is not the same as being with her, but eventually she and you may adjust to the new routine and she may thrive in a memory care facility.

Please keep us posted.

loveskitties

Is it possible to become her guardian?  If so, it might help with the legal and financial issues you are currently facing with moving her to the USA.

You might also want to check your own insurance coverage to see if guardianship would allow her to be included on your policy.

There are lots of things to be explored legally with the guardianship option.  You should probably see an attorney if you want to go that.

It is very difficult to know what is your best choice.  Becoming informed of your options and picking the one which not only keeps your mother safe but also maintains you own life will then become clearer.

Wishing you the best possible outcome.

ninalu

Hi Sarahruth,

I'm glad you found us and I'm sorry that you are weighing such difficult options. 

As others have mentioned, the dementia journey can be a long one. In my mom's case, we knew something was wrong years before her diagnosis in 2014. It is a horrible shock to see a parent so changed from the last time you were with them. It brings a sense of emergency and grief that is immediate. It takes time, I think, to process that initial shock and figure out a good plan. In my mom's case, as her health (including emotional health) needs have changed, our plans have had to change as well. 

With your mom having health benefits / care in the UK and your rightful concern about what would happen to those benefits and her accumulated costs should she seek care in the US, I wonder if there's an option for you to keep her in the UK for now and visit on some periodic basis; e.g. a few weeks every N months? 

I understand your desire to be with her now. Instead of doing an all-or-nothing initially (e.g. you go there indefinitely or she comes here permanently), I wonder is if you can give yourself a bit of time to plan by approaching the situation in stages. There's a LOT to assimilate (as a daughter) when this first happens. I agree with other replies to get good grounding in the legal and financial options. It sounds as though you have already begun all of this, which is great. Understanding how much time she can spend in the U.S. without losing her benefits in the UK may also be an important piece of how you manage this, in the event you decide to bring her here. 

Sending you warm wishes. Please do let us know how you are doing.

quartlow2

My heart goes out to you! I wish any one of us could give you "the" answer. I have felt the same about living in a different state from my parents here in the US. God only knows what's best for your mom. I pray a lot. I talk to others who love me and my parents (just Dad now as Mom has passed away). An unexpected blessing that has come out of all this is that my relationship with my brother and sister has deepened. We decided we'd put aside issues, that separated us in the past, and we'd focus on what is best for our parents. It has unified us and miracles have happened as we've prayed to know what is best for our parents. We were all willing to move in with them or have them move in with us. But what was best for them was to move into AL. I still think, everyday, about packing up Dad and bringing him home with me. Then his nurse tells me about an issue he's having (like not sleeping at night or any number of unpleasant things that a caregiver is paid to do) that makes me realize that he is cared for by 3 shifts of a knowledgeable, caring staff 24/7. No matter how many people I hire, I can never get that kind of care for him in my home. He doesn't like the food but I've tasted it and it's pretty good. Did you know we lose our sense of smell (and, therefore taste). So he's not going to like what I fix him that he used to like and he'll feel guilty about it. He'll feel more like a burden. So I call him almost everyday. He, fortunately, usually recognizes my voice.

dayn2nite2

She cannot come here - you will not be able to bear the cost of her care.

While your husband is understanding now, how will he feel in a few years when he's only seen you a few times?  There is a limit to everything.  If you go to live there, you may also be giving up your marriage in the end.

Why can't she be placed in her country with your father looking in on her there?

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