I recently moved in with my grandmother who is in the late stages of Alzheimer's. She no longer makes sense when she is trying to talk to me and has recently started to have incontinence. She has terrible anxiety and has started to pace a lot and is up off and on through the night walking around her room going through her clothes. She obsesses over things like washing her hands constantly because after she washes them, she doesn't dry them completely and then thinks her hands are sticky so she'll wash them again...also with any paper products like napkins, Kleenex and toilet paper. She will go through a box of Kleenex a week and it's not to blow her nose she just wads it up and will throw it behind dressers and stuff them between the cushions. I also am a single mother to a 3 year who is exceptionally hyper... sometimes it just gets completely overwhelming. I do have family that helps on weekends and after work but I find myself just feeling exhausted mentally and emotionally every night. I worry that I'm not cut out for this but I would never forgive myself if I just gave up and was the reason my grandma had to go to a nursing home or something... I guess it would just be nice to talk with people going through similar situations to let me know I'm not crazy or something...

Find Care & Housing
Did you and other family members look into how much is involved with around the clock care for someone with significant dementia? I suspect that sometimes family members don't get a realistic idea of all that is required. The constant behavior of the person with dementia may be extremely stressful, as well as exhausting. It's good to share your feelings and places like this are great. Your concerns seem quite reasonable to me.

Is there any way that you could get some help with her to come in several days a week to give you a break for rest and personal time with your child? What about an Adult day center? Are you being paid for your services? I'd explore how to make the situation more tolerable and keep in mind that it may not be realistic to do this alone, with a child and especially, as she progresses.
Helpful Answer (2)
Reply to Sunnygirl1
SunnySunshine Sep 13, 2018
We are trying to keep her home because if she has to go somewhere it's likely that the state will take her home for payment and no one wants that to happen. My aunt live right up the road from us and comes over every day after work and I honestly think she's the only one that sees just how bad she has gotten. Most of the family know she is not like she used to be but do not know the extent of it. Unfortunately the doctor she goes to isn't very good with ALZ and she has had no actual diagnosis as to what she really has..we just know it's of the ALZ dementia category.

Her sister has tried to come and take her out to her home to visit and she has a complete anxiety attack. Even taking her outside she gets very anxious. Within the last week she has started wanting to stay in bed all day. She wakes up in the morning and tells me she's so sick but she can't tell me what is bothering her. She has a fear of being left alone and I think that is part of the anxiety.

All of my bills and needs are taken care of by her income and my aunt's help out too. I also have a pretty good savings. Sorry my response is probably a bunch of babble mostly, I just have so much on my mind it comes out as word vomit when I get the chance to talk about everything.

Thank you for your ideas and response! I truly appreciate it
You are a wonder woman.

A three year old and a g'ma with so much energy.

I kinda chuckled when you said a box a week, we went through a box a day and multiple rolls of toilet paper. Are they saving it for something?😏

Late stage Alzheimer's is not for the faint hearted. It changes all the time, new behaviors, unexpected behaviors, tantrums, obsessions, fixations, loss of function. And it only gets worse, with a child, you teach and they learn, they become more independent and self serving (not the bad term) but with Alzheimers it is all in reverse it seems, what they could do yesterday they can't today, they can not learn or create new memories or skills. It is a heartbreaking journey for the family. Thank God the afflicted don't seem to know the difference, just existing.

I am curious why you were the chosen one to move in with g'ma? Normally we see the children stepping in to be the caregiver. Are her children around, do they help? When you accepted this role did anyone talk to you about the time when alternative care would need to be looked at? I'm just curious because this disease does progress to a point that 1 person in home care is not real, it is to much for 1 person to deal with. Not because you don't love her enough, because her needs are to great.

Sometimes when we love someone we have to make very hard decisions about their wellbeing, you are in that position, maybe not today but, very soon.

You have to look at what is truly best for her, not the old her, the her she is now. Would she really want to put you and your son through the agony of watching her die a little bit everyday, wear yourself out so you don't have time or energy to take your son to the park or have you cleaning her up after an accident?

My g'ma died from Alzheimers and it was 11 years of confusion, who was this person that looked like g'ma? Sadness, she didn't know who we were. Embarrassment because g'ma would have never peed on the carpet in the living room. To name a few things.

Knowing that professionals are caring for her is truly a huge relief. Knowing that she is being fed and showered, has activities designed for alz patients, is around people her own age, if she wants, as well as a lovely granddaughter and great grandson that visit often and bring special treats. This is all okay.

You are not, never will be the reason she has to go to a facility! It is this damnable disease and it is no ones fault, it just is.

Please research what this disease does and start thinking about the care she will need as it progresses and how you will deal with it, in home aids, facilities or ?? Then when it's time you will be prepared and not have any guilt, knowing that you are giving her the gift of the best care possible for her in the here and now.

Helpful Answer (4)
Reply to Isthisrealyreal
SunnySunshine Sep 13, 2018
I have found the paper products literally everywhere haha..she had a bunch in her bra the other day and I had to laugh and ask her if she was trying to false advertise!
And yes it seems that once I have finally gotten my daughter potty trained now grandma is forgetting to use the toilet.

About a year and a half ago is when she started to require full time help and at that time she allowed my incompetent uncle and his wife to move in as they were losing their house because they both stopped working.. from the beginning I thought this was a bad idea but my grandma has always babied her 2 boys and they could do no wrong..she has 2 boys and 4 girls. My other uncle was given a piece of the land to move a house on. My one aunt bought a piece of the land years ago from my grandparents and she comes over every day after work. Another aunt lives about an hour away but visits at least once a week. Another aunt lives about 5 miles away but can't be "bothered" with much. Then there's my mom..she is the one on the will to receive the house but her and my step dad live about 4 hours away. Anyway my uncle and his wife were not fit to take care of anyone. Uncle is a drunk and his wife wasn't much better. It all came to a head on July 5th when some things happened and it ended in my uncle's wife pushing my grandma and her getting stitches in her head.. I stepped up and said enough and moved in the day they moved out.

My family is very religious and their hopes are that she will just go on peacefully before she gets worse..I'm not saying that's not a possibility but no one knows how long she will be with us. I worked in a home for about 6 years and helped care for people with the same awful's way different when it's family though. Those people in the home I had no idea what they were like before the disease took over their minds..but I know who my grandma was and this person with us today is not her at all.

I'm sure it will come down to having a family discussion with what is best for her because with her getting worse, there is no way I can do it alone after a certain point.
This sounds like such a difficut situation.

I consider memory care to not be the worst thing that could happen. The 24/7 care necessary for somebody with dementia is often too much for one person to handle. And you have a hyper 3-year old on top of it, oh my!! You need to take care of yourself and your son too. You two are just as important as your grandmother.

You would not be the reason your grandma had to go to the nursing home. Your grandma's awful illness, and the supreme difficulty of caring for her would be the reason. One person cannot duplicate the care of multiple shifts of people at a nursing home or memory care.

Keep reading a lot of posts here by other caretakers to know you are not alone, hopefully that will help. And consider being open to other options.

Very best wishes.
Helpful Answer (6)
Reply to chdottir

Subscribe to
Our Newsletter