Feeling terrible about living long distance.

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I live 6 1/2 hours from my mother, but I have 2 sisters who live in town and also a brother who lives 3 hours from her. I am the youngest and they are older than me by more than 12 years. After a lot of bad financial dealings by my brother, who was DPOA, my mom added me to the DPOA to ensure her business was taken care of and then I became the payee representative for her account when money became missing. I had been doing all the visiting (rather than my brother) and checking on her doctor appointments, etc. My husband and I lived closer until 2007 when his job relocated us. When we lived closer, we always visited regularly and took her out to eat, mowed lawn, bought things to help her for her home, etc. The sisters who live there didn't spend quality time with her. One never went to her home to visit, but my mom would go visit her. The other sister sister would visit about once a week and would take her candy, or a few items here and there, but never took her out or invited her to spend the night at her house.
My mom's dementia caused us to move her into my sister's home over a year ago, (the sister who never visited her at home). Over the last year, I went home about every two weeks, made doctor appointments that my husband and I would take her to, cateract surgery on each eye, and 2 followup visits for that every 2 weeks. The sister my mom didn't live with never offered to help take her to appointments, never offered to help the other sister out by taking my mom for even one night. She was also too busy cleaning her house, or complaining that she couldn't bath her because she had had knee replacement a few years ago. When I lived closer I would try to arrange "girls day" with my sisters and my mom to go out to lunch or breakfast and take her shopping. Only once did one of my sisters go (not the one my mom lived with). They always had things to do and couldn't go.
Long story short, back in May I went and got my mom to stay with us for 2 weeks to help my sister get a break and also spend some quality time with my mom. After a week she fell getting up out of bed, broker her hip, had surgery here and her dementia worsened. She was here about 2 1/2 weeks after surgery and the rest of the family was on me about getting her transferred back home so they could visit her. My husband and I were with my mom 24 hrs a day, taking turns spending the night with her at the hospital. We didn't want her to feel alone. My brother had been 1 hour away visiting a cabin when my mom was having surgery. He showed up the day after surgery to tell me he blamed me for her getting hurt because I should have never brought her so far away, AND he wanted her taken back home. My sisters did come up to visit her, but the sister who never helped out much complained the entire time and also made it clear that if my mom went back to her town, she would not be able to visit all the time. So, I got my mom transferred by ambulance to the local hospital where she lives. My husband and I followed the ambulance for the almost 7 hour drive, got there at 2 a.m., made sure she was comfortable in her room before getting a couple hours sleep at a hotel (we have to stay at a hotel since there's no one to offer their home). I went to the hospital by 8 the next morning and stayed all day before going back home. I drove back to see her less than a week later when she was getting moved to a rehab nursing facility. I sat at the medicaid office for over 3 hours doing paperwork for her long term medicaid, again, no one offered to go with me or help with anything.
Now, my mom has been moved to the long term section and the sister who complains about helping is at it again. Her husband and her visit my mom around lunchtime to help her eat, but she is so angry and feels like she is obligated to go. She is making the nursing home staff think she and her husband are the only ones doing anything and causing attitudes . She has also told me and my husband we should move back there because "that's where I grew up"....translation..."you need to move back so I don't have to go visit mom all the time".
We are still going home every 2-3 weeks to visit I usually get there later afternoon and go straight to the nursing home for a couple hours, then all day the next day and a couple hours the morning before we leave. I have other obligations at my home as well, which my sister is aware of and has no empathy for what others are going through, only herself.

12 Comments

I too live a 5-hour drive from my husband who has the late stages of Alzheimer's and living in a nursing home since he stopped walking a little over 2 years ago now. My solution has been to rent a small apartment in order to spend at least one week every 3 weeks with him. That way I experience everything that is going on in the nursing home. I arrive around 10 in the morning and stay until 9 or 10 at night. I feed him his lunch and dinner.

The nursing home management is not happy that I stay that long and care for my husband while I'm there. I see and hear too many things. When things are not good, I do meet with management in order to find a solution. I never thought it was a good idea to just leave my husband in the nursing home without this kind of supervision and advocacy.

Family situations develop when someone enters the nursing and there seems to be one more responsible than the others in the family. My suggestion would be to call a family meeting and see how best to share the responsibilities. I know that a one-hour visit at a nursing home does not produce any results for either the person who is visited (too short) and the care level (management) being offered.

Good luck to you.
You are in a tough and very complicated spot. Family dynamics is making this very tough. I think you need to talk to a local senior center counselor (or someone they can refer you to). Start with a senior center in your home town to get some initial advice -- then when they send you in the right direction -- make arrangements with your "hometown" senior center to set up counseling session with your siblings to look at all options, aid needed, level of care and work out an equitable plan that gets everyone's input (positive or negative) and then lay out an action plan of responsibilities going forward. If one of you wants to participate less and would rather contribute more $ than time -- then that should be laid out (the "equitable part") and that will make it seem more fair to everyone. You may need to have a family mediator even and although that may cost money -- maybe a good investment to keep from tearing this family apart with resentment and blame. Don't let them guilt you into "moving away part" -- they chose to stay in hometown for their own reasons -- "not to be near mom" I'm sure. And yep its more convenient for them than for you and they have to grow up an accept that. There are many people who live away and don't have the means nor $ to make trips back and forth except maybe in a crisis; and they have their own guilt without other siblings heaping it on. You obviously care and have tried to be as helpful as you can. Start with family counseling with someone who has expertise in geriatric care and caregiving.
I can write Vol II ugh but first, I didn't understand...did the sister that you mom was living with agree to take mom back? Can mom live there or not?
No, my mom cannot walk anymore, so the level of care is too much without the financial means to hire someone to help. I think the sister who kept my mom prior to her accident would consider taking her if the other sister who lives there would agree to help, but she says she will not be put on a schedule of any kind.
You might want to consider moving your Mom close to you and do the best you can to communicate with your siblings. I too have been the sibling living farthest away (8 hours and two plane segments) and yet offering the most care for my Dad. In my case, there are 4 kids, 2 sons and 2 daughters. The closest sibling, my sister was a 5 hour drive.
This summer, it became clear that it was no longer safe for Dad to live on his own and so I offered him the option of living in assisted living close to me or to my sister. We were the two who have done the most hands on support to date. All the kids said they agreed this was the best solution. We all assumed he would choose to stay on the East Coast and closer to 3 out of 4 of the kids. Though he has early dementia, Dad decided to move closer to me. Because of my work schedule, I needed to get him settled before the semester started so I dropped everything and worked around the clock for more than a month to find an appropriate senior living apartment, clean out his his home, pack everything he is keeping in a truck, drive the truck 2,500 miles (with my partner) and move Dad into his new apartment. Oh, I also sold his house. The extent of sibling help was my sister and her husband came and helped for the final weekend of packing the truck and getting stuff to Goodwill, etc.
Since Dad has been here, my partner and I have him over for dinner several times a week and are helping him get settled in his new place (phone, bank accounts, hanging pictures, etc.)
During the process, my younger brother tells me that it'll be very inconvenient for him to fly out to visit Dad." I replied, "I completely understand." What I really wanted to say was, "what do you think it's been for me to visit multiple times a year since 2005!" I breath deeply and know that I've done the right thing for Dad. He will be safe and have the attention he deserves.
My brothers did not visit Dad when he was a car drive away even though they took vacations in places that were not that far from his home. Now, at least one of them wants to place blame for not spending much time with Dad on me. That's ok. I know in my heart that I've done the best I can for Dad.
I hope that you can find a solution that your siblings can agree to at least grudgingly. However, at the end of the day, I chose to put Dad first and let the inevitable criticism roll off my back.
Spiritspry, No wonder your father chose to live near you. Love your "put the best construction on everything."
My sister lived 10 min from mom, knew something was wrong with mom's mind but never took her to a doctor, called a doctor etc. Even when mom had chest pains sister would not accompany mom to the ER and more!. Even tho sister knew something was wrong with mom she never checked on mom in moms house. Mom was taking 4 kinds of osteoporosis medication, had a script to be filled post ER and had been given Namenda. Had sister ever checked....I know this because I was the little investigator 500 miles away. I did all the things you did and more (as did you) from 500 miles away. With email, vm, faxes, scans and the like it can be done. My sister thought she was a real gem for inviting mom to her house for dinner. HA.
Thank you all so much for letting me know I am certainly not alone. I am now in NC having driven late yesterday arriving last night...I spend a wonderful 10 hours with her today. I didn't get through the day without the complaining sister and her husband coming in to "take over" lunchtime with my mom, but as soon as they left, I had an enjoyable day hugging and kissing on my mom. I am striving to let everything run off my back with my siblings, but I'm not quite there yet.:) I will continue to try. Like you, spiritspry, I know I have done the things for my mom that I did because I love her and for me, there was no other way to be. And, I know my siblings will have to live with the things they did or didn't do. Bless you all and I am so glad to have kindred spirits to talk to. We could almost charge each other, after all, this is therapy..!
Our none involved siblings (or worse) won't have to live with anything I don't think. They don't have the wherewithall to look inside themselves to see where they might be lacking or to see where they might be able to give to another, particularly a loved one. I don't think what goes around comes around will apply to them either, although I wish we knew for sure...I sure would like to see what comes around for my sister.

Sister hasn't seen mom in 5 years...I just can't understand it. My mind cannot wrap itself around that kind of behavior or mentally.
Any nursing home that doesn't support extended visits by family & friends is not worth its salt. My daughter & I shared a nursing home room for 3 months after a near-fatal car accident. They let my partner or my 6-year-old son even stay the night on a cot if they wanted, and either family or friends was in attendance most of every day--I was so lucky! Staying in a nursing home can be really scary, even if you have all your cognition, between the screams and yells and pleas to go home from dementia patients, to the often truly awful food, reassurance from familiar people is welcome. Nurses and CNA's are usually too busy to help with things like retrieving a fallen pillow, so having someone do that or get you more Kleenex or bring in some take-out food: what a gift! Nursing staff notice who comes to visit, and I would not worry about what they think--they've heard it all, especially from defensive relatives. Most dementia patients seem to get about one visit a year, on Mother's Day. Our nursing home (the only one in a small town) even welcomed a session of my daughter's preschool in their dining room--the other patients really appreciated & benefited from the little ones' presence.
Living far away is a bear! I live two day's drive away, and with Mom at home with a caregiver that feels like too far. Once she's ready to move into assisted living (probably pretty soon), I think a place close to me is better--why not? it's not like she's going to be seeing her old neighborhood. We're more limited by the cost of things; a residence in Canada that's subsidized works on her income not her assests (her house), so will be much more affordable, although private care in the States is much cheaper.

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