Mom is 86 and has dementia. My brother and I moved her into an ALF against her wishes when she was no longer safe in her own home. The facility is located one hour from me and is six hours away from her home. My brother and I share caregiving duties. He takes care of Mom's legal and financial business plus takes care of her home which is near where he lives. He faithfully visits her every two to three weeks for a weekend. I take care of Moms medical issues and manage her care at the ALF. I visit her every other day and take her to appointments, church, and on outings. My brother and I work very well together, keep each other informed, and are supportive of Mom and each other. We are very close.
When we were preparing to take Mom to the ALF eight months ago I told her that her home would be left as is and maintained, which we have done. It is paid for and costs are minimal. She was very upset to leave home. She kept saying that Dad (deceased 1988) built their home in which they raised their children and where they planned to live for the rest of their lives. Even after eight months in ALF she still doesn't understand why she cannot live in her home near her friends and extended family. This greatly saddens me as well because I understand her desire to be in the home she lived in for 70 years. We tried using round-the-clock caregivers before moving her to the ALF but the cost was prohibitive and she did not like having strangers in her home while she was sleeping.
While preparing to move to the ALF, I told Mom I would take her back to her home for visits after she got settled into the ALF. I imagined going back for a weekend visit every 4-6 weeks. I am still working full time but I don't mind making trips back home. The problem is that it has taken a long time for Mom to transition into the ALF. Even though she gets great care and likes her caregivers she has still not accepted the ALF as her residence. She still wants to go home. The first three months in ALF she would pack up her walker with clothes almost every night and roll it to the foyer where she was expecting me to pick her up to go home. She fell four months after moving and broke her hip. I stayed in the hospital/rehab with her 14 hours/day for a month. When she returned to the ALF she seemed to be more accepting of the situation but still asked to go home. Her dementia has progressed and she is less mobile now, relying more on her wheelchair.
That being said, should I take her home for a visit at Thanksgiving. We can stay in her home and I will arrange for extra help with her while there. She can see that her home is the same and visit with neighbors and family. I talked with her geriatrician and her said it could be good or bad for her. My brother and some close friends think it would undo a lot of progress that has been made in her transition to the ALF. I am left with the final decision. I promised her that I would take her back for visits before she moved and it would break my heart to not follow through. I also made it clear that she would have to return to the ALF afterwards. She said she understood.
Has anyone had experience with this situation?
Can you plan a special Thanksgiving for her at the ALF, with you, your brother and perhaps other relatives and/or friends? I don't know whether to suggest bringing some decorations or something from her home, because it could just heighten her desire to return home.
I understand that it's heartbreaking for you and your family that mom can't live out her years in the home your dad built. But it is what it is. We don't always get to live out our dreams. At this point in your mom's life, being safe and with loved ones around is what's important, not a house, in my opinion. So make a special Thanksgiving where she is now and make new memories and traditions there.
If it was a trip of a half an hour, I'd say maybe it would be worth a try once, and then to decide from there. But a 6-hour trip each way? Oh my! And it will be more like a 7 or 8 hour trip, with every break taking a long time. That is a lot for an elderly lady with mobility issues and dementia.
I think the most likely outcome will be a setback to her acceptance of the place she really has to be. And that could mean she'll cry or nag or plead the entire trip back. This is why the distance matters!
I suggest two alternatives:
1) Bring the special occasions to her. My mother loved it when we brought in tablecloths, nice china, a centerpiece, and traditional foods. Another lady I know really got a kick out of seeing her grandkids playing games in the room they'd reserved in the NH.
2) See if pictures help. Since it was no longer feasible for my mother to visit my house, I took pictures of my house plants and outdoor decorating. If it turned out to be upsetting to your mother to see pictures of her home, you could easily stop looking at them. If she enjoyed it you could put them in a scrapbook or have the photo shop make a little book of them, and you could often reminisce about memories of each part of the house.
Your heart is absolutely in the right place! This decision needs your head, too.
Good luck! And please let us know what you decide and how it works out.
I wouldn't dare bring my mom back home and am even careful about what off ramp I choose when she's in the car with me as she asks why she can't go home
Tonight as we were walking down her hallway to her room in memory care - she said she hated the place
A few months ago she even attacked me when I brought back to her facility after dinner - it took every ounce of strength I had to pull her wheelchair in backwards with her dragging her feet screaming and swinging her purse at me all while yelling for help
I would love for her to be able to visit her oldest friend who is 95 1/2 but she lives only a block away and I couldn't imagine driving her even back to the neighborhood where she lived for nearly 70 years
This is heartbreaking - I know
1 the trip is a bit much. There can be a lot of confusion when in a car for that length of time.
2 There is a good possibility that when she says she "wants to go home" she does not mean the physical home that she left. Many people with dementia will associate "going home" to a time when they felt well, safe, comfortable and with friends. It is not the "home" with 4 walls and a roof.
I don't know if you do this now but when you talk to her about the
Assisted Living place she is in now refer to that as Home..when you go out to lunch or for a walk..say ok, we are going to go home now. When you take her to the Doctor, on the way back say..I am going to take you home now.
As for Thanksgiving...A lot of people at one time can be very confusing and frightening. A lot of noise, a lot of people that she may not recall. And that can be both frightening as well as she may be embarrassed by the fact she does not remember.
Most Facilities have a formal family dining room that can be used for individual family functions. Ask if you can reserve it for the week before or even after. Bring a good meal, a few family and enjoy a nice meal with Mom in a setting where she is comfortable.
She undoubtedly will have a Thanksgiving meal where she is and there will be plenty of people visiting because it is the holiday. So she will have plenty of excitement. Plan your visit for a day or two before or after
I found with Dementia one day is just like another. New Years Day, Easter, Christmas, Thanksgiving they are all just days like any other day of the year. If you want to make a day special make it special. It does not have to be special just because there is a pumpkin or a turkey on the calendar day.
Keeping things calm and routine will do more for her attitude than having a big "to-do".
Chances are she won`t remember,so do what your heart says.
She has "escaped" from her facility several times and fought like crazy when they caught her on the highway which runs a few feet from the facility. Last time, it took 4 adults to bring her back inside cursing, spitting, kicking and swinging her cane at them! They have had to put an ankle bracelet on her and an alarm on her window which she opened and went out of. She is 87, frail, has fallen twice in the past 3 weeks and rebroke her left arm which is mostly metal and pins.
I promised mom I would take her home to visit but, the doctor said no, it wouldn't work and would only require extra meds to get her back to the facility and that wouldn't be good for her. I finally told her I was sorry, but I couldn't take her home since she wouldn't let anyone live with her and refused to allow us to help her, the doctor had turned her guardianship over to the state and we would be accused of abuse for taking her home and leaving her. She didn't believe me until the case worker confirmed it. She has been there nearly a year and still tries to get out but can't remember where her house is or who her family is at times. I do my best to see her every Sunday for a couple of hours. I've tried to take dinners down for us to share but, she refuses.
You will always feel a certain amount of guilt but, if our parents were able to remember, they would tell us NOT to feel guilty for doing what is best for them. I wish you the best.
In my experience, it is often unwise to take a dementia sufferer "home" for a visit especially when they are having difficulty accepting their current circumstances. There is a good chance that doing so will put you back to square one and just cause your mother more upset in the long run. Also, I would think that the journey of six hours--total of twelve hours--would be emotionally and physically taxing for your mother and may cause an increase in her confusion and disorientation and cause her upset and fear.
Perhaps you could suggest to mom that a long trip is more than YOU can take on right now and that you will let her know when the time is right. Or maybe the weather is too bad to make a long trip...use any reason that seems right and then change the subject. ( I could always distract my grandmother with a hug, one of her favorite remembrances or a silly story.) In my experience, the subject will eventually fade away.
Also, I just want to add that I worked as the Activity Director in the SNF. One of the things I did was to take our residents on outings outside the facility. We would go out to eat, to a movie, to a park, have a BBQ and etc. We might be out for about three to four hours. This was about as much outing as could be comfortably handled by most of my residents. However, my dementia residents did not tolerant an outing of more than an hour or so. They would become emotionally and physically overwhelmed, anxious and, ultimately, confused and afraid. Even a few hours outdoors in our yard was often too much for them. I think that our loved ones with dementia do not perceive the world in the same way we do. Things that were once familiar can be foreign and scary. Sounds can be too loud. I stopped taking my grandmother out of the facility because you could see the uncertainty and bewilderment on her face and her confusion would become more evident.
Also, I don't think the pleasure your mother would have from a visit will be outweighed by the upset she will have by having to leave her home yet again and again. My best advice is to forgive yourself for making a promise that it is unwise to keep and to know that the greatest gift you can give to your mom now is your love and attention...and lots of hugs!
Also, have you or your brother taken your mother from the facility for a day or overnight visit since she arrived there? I ask, because, when I have taken my cousin from her Memory Care facility for short visits, upon returning, she was disoriented. She seemed confused and didn't know where she was. I had to take her to her room and show her her things and explain that she lived there. She even started to cry, because she wasn't familiar with it. She had been there for months! I finally wheeled her into the tv room and showed her the other residents and staff. Eventually, she became aware of where she was. It taught me a valuable lesson. You risk upsetting her by taking her out and then returning her later. I'd do some trial runs, if you decide to take her out for a long visit. I agree with the other posters who discourage it, based on my experience with my loved one.
for holidays, but I don`t live six hours away. Given the distance,its best to reconsider.
I hear you and the others who have been kind enough to address my question. Thank you.
I have taken Mom to my home, one hour away from the ALF, for one and two night stays. The last time was immediately after a hurricane that knocked out power at her ALF. She did well with the visits and seemed to enjoy herself although I was worn out afterward.
My brother and I have taken her out for day trips for family visits at my home and at friends' home. She handles those visits well but starts suggesting that she needs to go home by mid-afternoon. That's when we pack her up and head back to the ALF. She is usually disappointed when we pull up to her ALF instead of her real home. She does recognize it as where she stays and is not confused about where to go and who the people are.
In her world she usually thinks she is living in the hospital where she worked for twenty years and the nurses and caregivers are her coworkers.
I appreciate the concensus that I should not take Mom to her home.
You will be a walking basket case doing a drive like that - you will have the same conversation 40 times - plus what if as you arrive she says that's not her home & demands to be driven right back to her new home [LTC]
Also think what will happen if she sits beside driver & reaches over & tugs their arm or the wheel possibly causing an accident - if it's just the 2 of you she would want to sit in front not back seat so that is something also to be aware of -
Some promises can't be kept nor should they - 'confess' your sin to yourself & move on & forget about it - don't carry the guilt either because you are now in the 'parent' role not the 'child' - did you never promise something to your kids & not gone through because circumstances changed & you couldn't follow through ... it's the same thing here
I am glad you are re-thinking this, Bocadebo (I HOPE you are).
(I lived with my grandmother on weekends and during summers when I was a child. I can hardly bear to think of my own grief if my awful family and I had moved far away from her, and they only took me to 'visit' her for an afternoon once a month, and then I had to drive back all that way to live with them. I would have been inconsolable. Not sitting in the car fondly reminiscing about the good times I spent with grandma, but that they were dragging me AWAY from her, and a long car ride, to boot! Oh, how horrible that would have been if it happened!)
THAT IS AN ENTIRE DIFFERENT SITUATION THAT YOU DESCRIBE. I ESCAPED AND HAD THE FACILITIES TO ASSURE MY SONS I WOULD BE TAKEN CARE OF. THIS SITUATION REQUIRES A LOT MORE TACT. I THINK HAVING THE FAMILY VISIT AS AN OCCASSION TO CELEBRATE (MAKING HER THE STAR) WOULD WORK. YOU NEED TO GET HER EXCITED ABOUT WHAT FAMILY MEMBERS ARE PLANNING AND LOOKING FORWARD TO. DEPENDING ON THE PERSON THAT MAY MAKE HER FEEL IMPORTANT. PERHAPS EVEN (HORRORS') THINK THAT LIVING IN HER PROTECTIVE ENVIROMENT MAY "JUST A NEW WAY OF LIFE". I WISH YOU LUCK AND WILL BE THINKING OF YOU!
I wonder did you actually return to the facility or permanently escape.
Last Fall I was hospitalized for three months. After two they tried to transfer to rehab. I refused and fought to go home and still feel that was the right decision because I felt I was too ill for rehab. I had two more admissions in quick succession to a different facility for a total month and finally have been home almost a year and still slowly recovering.
Please keep writing and sharing your experiences. It is good to see the other side of the caregiving story. There are so many good people here. Hugs