My 78 year old single mother has been recently diagnosed with early dementia, depression and emphysema. She also suffers from anxiety attacks. She takes medication for all these but they only help a little. I am her only child and moved in with her 6 years ago after living abroad for most of my adult life. She is now very lonely during the day but too apathetic to do much about it. She is becoming increasingly possessive over me and looking to me for company which is becoming stifling as well as impractical as I work fulltime and in a relationship. She is not averse to going to a care home and we’re organizing a trial period to see how she gets on. The doctor has advised me on not telling her she has early dementia because this would burden her even further, however, without her knowing her condition she can't appreciate what the limitations will be for her. Will it help her to know what’s coming? Also, I'm increasingly feeling guilty of the resentfulness I feel that as an only child I'm suddenly in this situation. Are there any single children out there feeling the same?
Mom found a lot of contentment with adult day care (ADC). She was resistant to going at first, I think sticking with me was her default setting at that time; I became her security blanket. Within a few weeks, she looked forward to going and spending time with all the other "folks" she saw there. Mom enjoyed going for drives past her childhood home and neighborhood as well as the parks where kids were playing. She loved singing and music and we often had a sing-a-long; singing would calm her when she was having difficulties. She loved to be touched and have her lotion applied all over.
If you plan on continuing working, I strongly encourage you to place your mother in memory care (MC) sooner rather than later. She will adjust better when she is higher functioning and the MC will be her normal when she declines. She will also benefit from social interaction. You can visit her daily if you want. When I couldn't care for her at home any longer, I planned to continue to visit my mother daily to apply her lotion and have a sing-a-long. If covid causes a lockup of the facilities again, I would try to bring your mother home again with an in-home caregiver.
I simply tell her she's not "stupid" or "lazy" or "crazy" whichever upset she might voice. I tell her she's demented. She sometimes asks me what that is and I explain it is brain damage. Damage doesn't make you stupid it makes you "damaged"
Sometimes my Mom will say "Like my Mom had?" and I say: "yep". Then she calms down because she has (for the time being) a point of reference.
But, my family is pragmatic and straight forward.
Check out care facilities that offer respite.
It's good she is willing to give the care home a try and I hope that works out for you. Good luck.
https://youtu.be/u5QMeQpkPhA
It’s only a few minutes long, and will help you understand why this is all feeling bonkers to ya.
"She is now very lonely during the day but too apathetic to do much about it." She can't do anything about it, her mind can no longer sort things out.
I think your "trial period" is a good idea. You may be asked not to visit too much. You need to allow the staff to do for her and she needs to learn to depend on them.
The “limitations” will be addressed by your are sites staff.
Knowing “what’s coming” will not carry the meaning youare hoping it will, if she is already confused and forgetful.
I’ve been “the only child” twice, first with my mother, and now with the last of her sisters. It is brutal, but I will tell you honestly, there is often NO SHARING OF RESPONSIBILITIES , whether there are siblings or not. And sometimes a sibling is MUCH more trouble than dealing with just the parent.
What you are “feeling” is doing her no harm, but for your own good, find a sympathetic, non involved listener and talk it through.
I'm sure her Dr. told you too, that depression is a leading factor in causing dementia, so hopefully her depression is well treated.
When my husband was diagnosed with vascular dementia(the most aggressive with a life expectancy of 5 years) in 2018, I chose not to tell him, as I saw no purpose in him having to have that in the back of his mind. Instead, we focused on making the most of each day, and as hard as it was some days, I wouldn't change a thing, as I lost my husband in Sept. 2020.
I hope and pray that your mom will like the facility she will be trying out, as it's important that you get to continue on with your life. Just because you're an only child doesn't mean that you're responsible for your mothers care. You have a life to live too, so make sure you are doing just that, as you're not getting any younger either. I wish you both well.
A lot of the new behaviors are related to the decline…you are her one constant, and so she’s keeping you close. She may have lost her executive ability and so now can’t initiate anything, so this looks like apathy. It’s not just her memory that’s affected, and she may be having more deficits than you realise. A move sooner may be beneficial as her coping skills may still be intact and she could adjust better. Be aware that it may take 3-6 months for her to settle in at a new place, because her short term memory may be shot—routine and repitition will help her lay down a daily pattern and releive some of her anxiety caused by not being able to remember anything.
Have you read this? Very helpful.
http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf
You may also want to go to here as well, lots of input from folks experiencing similar things.
https://www.alzconnected.org/discussion.aspx
You aren’t alone!
The care home trial is a blessing and if it’s a good one your mom will have kind people around her. My mom leans on me emotionally a LOT and says no one calls or visits which is a) not true and b) when walking around her facility/grounds people say her name and greet her. She is further along than your mom I think, but I’ve found the word ‘pre-arranged’ to be kind of a magic bullet. Like, “ Oh, no worries, your accomodations tonight and meals are all pre-arranged.”
Mom also has had a stroke and seizures, so different situation from yours, but when she mentions her memory I tell her it’s from the stroke & seizure. Which is lousy news ( and given over and over and over ) but she genuinely appreciates the info. I don’t blame the dementia/alz itself. This seems to work..if your mom starts to wonder about is there another physical issue you could pin it on?
Best of luck to you!
[Aside: if you think you already know what the limitations will be for your mother, or as you put it "what's coming," perhaps you aren't the right person to explain dementia to her anyway. Nobody can possibly know at this stage in what way(s) she will be affected or exactly what course her particular disease will take. Assume nothing! - and for heaven's sake do not disable your mother by deciding on her behalf that she can't do X, Y, or Z.]
You can: wait until she asks, then give her truthful answers worded in a way she can comprehend. Draw her pictures, show her diagrams. Share information from, for example, alz.org which is designed for people living with dementia and will use appropriate, comprehensible terms. Encourage her GP/other doctors to be truthful and ask-then-trust them to be sensitive. Nobody's going to say "you're losing your marbles, love. You're doomed!" They may be able to explain to her that Disease X is affecting how her brain controls Task Y, and perhaps in a health care setting she'll be better able to focus on what she's having explained to her and ask questions of her own.
Important: the brain disease that causes dementia can also have serious impacts on mood in various ways. Ask her lead doctor to keep her anti-anxiety medication under review to ensure it's the right drug in the right dose.
Remember, you do not have to solve this problem all at once. It can be a varied conversation over time, dealing more with practical concerns than understanding of the disease as such. E.g. "I realise how hard it is for you to gauge how long it is until I'll be home, and we don't want you to worry for nothing. So I've recorded a message on my cell phone reminding you to look at your clock and that I'm usually home by six. Would you like to hear it now? - we can play it back and make sure you're happy with it."
The repetitive questioning, clinginess and - just sometimes - frankly bonkers demands of a person entering on dementia can become incredibly stressful, tedious and frustrating. Do not blame yourself for minding this!
I'm glad you have this trial coming up, and I hope it goes really well for both of you. Keep in touch, hugs.