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?
That's like telling a kid that they are going to die.
She knows that she is failing in many ways. Documenting it does not improve it.
What a wonderful thing that she is interested in a care home. Keep your fingers crossed. She may well say she doesn't like it so try to make the experiment last longer.
As for being an only child - even in large families with siblings, the caregiver person who stepped up to the plate is, more often than not, an only child when it comes down to the work.
If you feel the need to tell her about dementia- think about why- it isnt like she can prepare herself. Actually i think your preparation is more helpful- get a plan. Get resources and know what is coming and what more services she will need.
Is there a senior day care or senior group she can attend during the week so that you are not her only chance for human contact?
Can the dr advise if a health aide is possible to come in to be with her? Is it possible to advertise for a companion like college student intern in health field who may visit her for a few hours, or a church that does senior visiting?
As far as telling your Mom about the dementia diagnosis, I'd say it depends totally on where her memory is now. My Dad hasn't technically been diagnosed, but if he was I wouldn't tell him. He's at the point where he wouldn't remember anyway. He'll forget things that I told him 10 minutes before - and always forgets why he is a taking a memory medication and what it's for. (Ironic, right?)
If you really think that telling her will help her understand what's going on without making her depression worse that's one thing, but I don't know that it'll help her appreciate the upcoming limitations. You have to ask yourself if knowing that she's slowly losing her mind help her? You know her best.
I would look for a new doctor, get a second opinion, and get a review of her conditions and medications (to make sure these are not the cause of any confusion she is experiencing).
* She still may not understand her limitations although supporting her to accept herself unconditionally by loving her unconditionally will hopefully hope.
* I tell clients that "I'm going through the same thing" - forgetting - while it may not be exactly the same thing, it is comforting to another to know they are not alone.
Gena / Touch Matters (see below)
A transient ischemic attack (TIA) is a temporary period of symptoms similar to those of a stroke. A TIA usually lasts only a few minutes and doesn't cause permanent damage. Often called a ministroke, a transient ischemic attack may be a warning. About 1 in 3 people who has a transient ischemic attack will eventually have a stroke, with about half occurring within a year after the transient ischemic attack. A transient ischemic attack can serve as both a warning of a future stroke and an opportunity to prevent it.
Her largest but still "only" a TIA per all hospital tests... has left her half blind.
She also suffers from Vascular Dementia now.
the copy and paste official medical responses rarely reflect the reality that people live.
Pick a place that is close to you so you can assure her you will visit. Also, at first maybe you can take her out once a week, take her to dinner or to church. This way she won't feel like she is locked up, and she can still live a normal life.
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.
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."
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'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
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.
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.
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.
I agree with the doctors, don't tell her.
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