Mother with vascular dementia has been in a memory care facility since December 2021. Even though she has finally made a friend and has settled in to some sort of normalcy, she still asks to go home even though she does not know where home is anymore. My sister and I would love to take her with us when we go to family functions or to the park or to shopping or out to eat but it’s literally a physical fight to get her back into the facility after we take her out for fun. So, we haven’t been taking her out and the guilt is horrible. I hate the fact that she misses out on the things that she used to do. Any suggestions or similar issues?
You say guilt but I would ask you to consider that what you are feeling is the other G-word, which is grief. Guilt belongs to felons; they seldom feel it. You are a human being with limitations. You aren't God or a good fairy and you have no magical powers to help in this.
It is normal to mourn and grieve these losses we are witness to in our LOs. It would be abnormal not to be hurt by their losses.
Your Mom has had her life, and I hope it was a good one full of wonderful memories for you. Now she has been overtaken by a dreadful disease which will cause loss upon loss for her throughout the remainder of her life. Don't make it worse with expectations of lovely field trips that only end in more grief.
I am so sorry for all your Mom is going through, and I am sorry that you are grieving so over it, but it is WORTH the grieving. Allow yourself to feel all the pain, but don't allow yourself to make yourself somehow responsible for it.
"As their disease progresses, they may have access only to their first 50 years, then 40, then 30, and so on, until they go back to their childhood memories. This is not an orderly reversal – the person may remember more or less on different days and at different times during the day.
This results eventually, in the person with Alzheimer disease/dementia thinking they are much younger than they actually are. It is not as though they realize they are, for example, 81, but they can only remember their first 30 years. Instead, it is as though they are the person that they were at age 30. Consequently, they are confused, because they may not recognize their family, since they are looking for the individuals they were sharing their life with at age 30."
This is why folks with dementia are constantly asking to 'go home'........they're back in time and looking for some place that no longer exists. Distract her when she talks about going home, and bring out some photos or a sweet snack instead. Get her off the subject of 'home' and that's your best bet.
Your goal now is to keep mom relaxed and not agitated, and in familiar surroundings, which is her Memory Care ALF. When you take her out, she's disoriented and and not sure what's going on. She doesn't want to go back and then you're fighting TO get her back to the MC. That creates a bad scenario for all concerned. Leave her at the MC and take the fun TO HER instead. That's what I did with my mother who lived in MC for the last almost 3 years of her life. It got too difficult to take her out, and if I brought her to my house, she immediately wanted to leave and would get hyper and nervous about it 'getting late' or 'the weather'. I soon realized I was creating more trouble for her than curing by taking her out. So I'd bring food and fun to her in the Memory Care. I'd bring pizza and the grandkids and we'd have a pizza party there in the library. Or Christmas Eve dinner of lasagna with gifts and decorations. She didn't feel like she was missing out that way, and neither did I.
That's what I suggest to you: bring the fun to HER in the MC now and cut down on the stress and confusion in bringing her out. Realize that she's in a different state of mind now, and YOU enter HER reality.
Here's the article I mentioned:
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
It's a free download with fantastic information about dementia from HER perspective. Lots of tips and tricks to use yourself to help you with the journey you're on.
Best of luck
If there is a family gathering that you would love to have her attend why not bring the people to her. Small groups can visit at a time, not the entire clan at one time.
So people that have not seen her in a while can be the first to visit. (any from out of town for example) then the rest. Best if it would or could be done over the course of 2 or 3 days.
She would have visitors, would be less stressed.
No reason for the "G" word. You can feel bad or sad that she can not be involved but guilt should not be a feeling about this.
I never take her anywhere, she is no longer mobile so would be very difficult to do so, but when I was able, she didn't want to return and got very angry. She also got very little joy out of going places.
I personally wouldn't take her anywhere and instead bring as many things to her that will give her joy.
Your Mom could be asking to go home just because she wants a change in what she sees and for her, home is a way of asking for that scenery change. I used to think that I’d be able to take my Mom with me on errands and go out to eat with her. However, as the dementia has progressed, it has been tougher to do the wheelchair transfers as well as she is becoming more incontinent and combative.
I am sure that when you take her out, she is having more fun and stimulation, than if she stayed within the facility. She wants to be with you guys since you guys are doing fun things and if she only sees you while you are doing fun things, then you must be doing fun things all the time and she wants to be there!
So I am a boring person. I bring outside food to her place (especially fresh fruits). We try new takeout food in her room. I notice that my mother brightens up if we walk around the parking lot in the sun then go back. We still go for rides, like to the car wash and the drive up window to Starbucks and the bank.
After the outing, she and I feel better, however, going back is okay because I’m clearly leading a boring life (She actually told me that)
You might see if you can do fun things with her in her room or the facility. That way, she will have pleasant memories of the facility rather than a place to be dumped while everyone else does fun things.
Its taken me awhile to adjust to my new normal. However, with her combativeness and incontinence (in my car and when we go out), and my difficulties doing the wheelchair transfers, this is much better than the arguing, the crying, and my angst.
Because.. besides the mobility issues, it would cause her much upset. It had taken much pushing, convincing & threats of Doctors & Police to even get in the door. Emotional upsets now took much time to recover from.
"Oh" she said. "I didn't realise. In these cases, better to stay put. Visit instead".
I did feel a little pang of guilt as I watched an elderly man transfer his elderly wife from her wheelchair into his car one day.
But Alva is right - not really guilt, but grief/sadness.
No clue and most of time she would forget that we were picking her up and be in the dining room eating when we came there, although we called her 1/2 hour before we left.
Not worth it for her or us. She is not the person we knew. We had to adjust. Guilt? No reason to feel guilty we did not give her this disease. Guilt is self-imposed a total waste of emotions, serves no useful purpose, keeps one stuck.
2. Do not take her out of memory care.
3. Read 1 and 2 again until this sinks in.
Lrs123 … my motherinlaw called me friend too. That was ok … she knew someone cared.
one walk up and down the hall to the door and she began to fade and id leave.
once a week was enough. I tried two times once and shed forgotten who i was. Once a week shed recognize me ! Smile. Open her arms and say “im so glad you came.”
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