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?
[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.
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!
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!
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.
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.
"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.
https://youtu.be/u5QMeQpkPhA
It’s only a few minutes long, and will help you understand why this is all feeling bonkers to ya.
It's good she is willing to give the care home a try and I hope that works out for you. Good luck.
Check out care facilities that offer respite.
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.
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 agree - but I didn't always.. I always thought honesty was best.
If I knew my ankle was broken I could understand why I had plaster on, why I shouldn't put weight on it, why I had to use crutches, that walking around the city for half a day would be too tiring on crutches.
But if my brain has the problem..? I probably won't understand what this actually means. May make me worry & stress more. Even if it is explained, if I have memory problems I will forgot the conversation. I may lack judgement & planning ability, so make unsafe decisions. I won't understand why I need someone with me when going out. Won't understand a full day outing will tire and overwhelm me. Be unable to calm down or communicate.
You can have a short simple *specific* answer ready if she asks. Eg: your emphysema makes it hard. You need a bit more oxygen.
I told him some residents have dementia but he has ‘confusion’ I think it was easier and more hopeful for him to accept that. Later I’m sure he knew but we never discussed what his future would look like.
he would have given up from the start. Everyone’s different and you know your LO. !!! There’s absolutely no hope for dementia everyone knows that and so what’s the purpose of letting them know early on ??? Think my husband would have given up from the start if someone told him .
no easy answers or options for this brutal disease.
good luck with it
I agree with the doctors, don't tell her.
The crux of the matter is this. When someone has dementia they cannot appreciate limitations about things that will happen in the future, because they can't remember what you told them. You cannot hope to reason with someone whose brain is no longer functioning properly. Obviously I don't know what stage she is in, but providing her with this information is not the same as when she was younger and in full capacity.
I'm so glad to hear you are organizing a trial period for home care. You're also lucky to be working and in a relationship; those will keep you busy and sane and unable to care for your parent 24/7, which is a GOOD thing.
Make sure that that trial period becomes a reality. Get as much help as possible and know that you are doing the best you can. That's all you can do.
It's hard to bear this burden alone. And to have lived independently for so long and suddenly have to take care of mom is a huge change for you. So frustration is called for, but you should try to get over resentment. Not to be mean, but as an only child didn't you always understand that someday it would come to this point?
I am one of 5 kids and the only one that cares for Mom and Dad. Dad died last year of Alzheimers but Mom is fairly independent at 89 years young. She misses Dad terribly (married 67 happy years) and can be emotionally needy at times. And she is still time consuming. We talk every day, sometimes several times, she has lots of doctor appointments and I take her grocery shopping. When I go to movies, concerts, dinner etc with my friends, Mom often comes along. I'm lucky everybody loves my Mom and accepts her, but sometimes I want to enjoy my friends without her! But I admit I feel resentful that none of my siblings pitch in. I would love it if they invited Mom for a weekend, or came to visit. I can't even get each one to call her once a week. I would be ecstatic to take a vacation, but can't leave Mom for a week or two. It's maddening to see the facebook photos of all the vacations my siblings and their adult children enjoy but they say they can't spell me a week. Yes, I am resentful!
Your Mom needs help, but it doesn't necessarily mean you are the only one to do it. Many areas have geriatric day care to get Mom out and having social interaction. Hiring a caregiver can also offer you time off. Home Instead Senior Care offers companion services for people who don't need a lot of care but need some company. (This is the job I do.) You have many options, and if your Mom is open to the idea of moving to some care facility half the battle has been won.
Good luck.
I asked my sister who lives on the "left coast" to takes over the responsibility of ordering mom's groceries online. Even that tasks still seems to involve me each month however. I asked for input to pre-arrange mom's final wishes. Nothing.
So, I take responsibility for my mom. When I'm peppered with questions, I offer to get my siblings on the call with the doctor.
Last week was emotionally and physically draining. When necessary, I reach out to two caregivers I know. Try this. Don't talk to people who say, "You should be happy you still have your mother."
Do GET ALL OF THE HELP YOUR MOTHER'S MONEY CAN BUY! Did I say that loudly enough?
Find out about respite care for yourself. While she's able talk to an elder care attorney about all things. Your siblings will suddenly become available at the reading of the will. Sound harsh? Keep reading this forum.
I've decided when my brother comes to visit, we will take her on a mini vacation, go to the casino, eat out, go hear some music, all with her money. Yes, I will spend her money making her happy and comfortable. The nursing home only gets it in the end.
Resentment from my other sibling's three-week vacations (even now on a five-month tour, with THREE days plugged in to see mom) wasn't hurting anyone but me.
This is the role I created. I don't know if this is allowed, but here's my cell. If you every want to text. 215.266.5027.
Have you tried to get her to an Adult Day Care program? Most are designed for people with dementia and are a safe place where your mom can get involved with activities, you get a break from her, she from you.
She will shadow you more and more as you are her "safe person"
If you can not get her into a Day Care Program I suggest that you hire a caregiver that will come in and watch her while you go out and have some time for yourself, get things done that are difficult to do when you take her with you. A doctors appointment, getting your hair done, shopping. It is important that you have time for yourself.
I'm an only child as well and have plenty of resentment for being the only person on earth to deal with my mother (and my father, too, up until he passed away in 2015) since I had to move them close to me in 2011. I think you and I are both fortunate in that our folks have the funds and the willingness to go into managed care, however, so DO make use of that service asap. That doesn't let you off the hook in any way, shape or form, though.........it only prevents you from doing the hands on care giving, which is good. Everything else will fall on your shoulders, as it does mine, yet you'll hear people say how you 'ditched your mother in AL and now have no worries or duties to manage whatsoever'. Which is a joke. I have 1001 things to do for my mother including managing her finances, trips to the ER which we just took this past week, talking to her doctors, medication changes, and a thousand other things in general. It's been a good thing and a blessing for my mother though, b/c she stays busy & there's lots of people to canoodle with and activities/meals/outings to keep her occupied in AL.
Wishing you the best of luck managing HER life and YOUR life at the same time. It isn't easy but you can do it, if you play your cards right.
Glass of wine ( the good stuff! ) to you and the poster here. Shoot, all of us really
This is a hard question. I am inclined to agree with her doctor and say don't tell her. At least not at this time. If she is able to try out a facility and it works out well, meeting people may help with her depression (which may well be mainly a result of the anxiety - so finding the cause of that and treating it might be more effective than treating the depression).
If she is less depressed and has been mixing with other people, some of whom will no doubt have dementia, then that may be the time to tell her, when she can see that others are still living good lives and getting enjoyment from life, so it is less to "worry" about.
I know that is a sort of ideal situation for dealing with your question, and it wouldn't be right for everyone, but telling someone they have dementia is such a personal thing for them to process one has to some extent to play it by ear, and you know her best.
I waited over three years for a doctor to spell it out for my husband and none of them did. When my husband was faced with a surgery he did not want but was struggling with whether his "wants" should be outweighed by "what is the right thing to do" I finally told him about the two different dementia diagnosis because going under anesthesia would not have a favorably outcome for him. He needed that information in order to finally feel okay about his decision.
It should not have been on my shoulders to have that discussion with him. His pcp or neurologist should have explained his diagnosis to him, discussed what the future holds, and provided us both with direction for support services.
So to Ricky6, I say, "Yes, it changes things."
When you're aging, everyone starts forgetting things.
And dementia progresses differently with different people and it can be years before she's really effective enough by it to need Caregivers.
Soutdated like it would be a great idea fir her to live in her own apartment in Assisted Living.
She would have plenty of people around that she can make friends with.
Find one that offers plenty of things to do, one that has a special room that they can go to to hang out with others.
She'll enjoy not having to cook and she can go to the Dinning Room to eat.
She won't be counting on you as her only friend.
LIke you said, you work and are in a relationship.
Tour a few places and let mom pick one out to live in.
Or
Find a Senior Day Care that she can go to a few days a week to meet people and make friends.
They are there for lunch,games, crafts.
Onice she meets people then they can come over and visit and she won't be lonely.