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Mom with Dementia

viva

Veteran

Feeling a little stressed .... mom and dad are arriving on Thursday night for a three-week stay. I'm looking forward to being with them, and it's likely the last time they will stay with me as mom's health has declined significantly over the last year and we are looking into residential care for her. But I am also really worried about the stay. DH will be gone most of the time for work, so I am on my own, and my dad is also declining (hearing, focus, etc.). Mom is still alert and happy, which is great, and she is generally able to recognize family and be in the moment, although conversations repeat over and over and she can no longer really care for herself. She can't be left alone and has had bouts of incontinence.

We have a terrific local adult daycare here, so three days a week, I will bring her there for a half-day, which will give me a small break and give her some socializing. She has been there before (not that she will remember) but it's fantastic. (That time will also allow me to keep my business afloat.) But generally I will be with mom and dad through all of their waking hours.

I know this is likely my last chance for an extended time with her, whatever kind of time it is, but frankly I am a bit afraid given this new stage we are at. Any advice would be great.

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29 replies

Latest reply was from shiny

missvee

Veteran

It's a tough situation for sure. I suppose you can start by adjusting your expectations -- it sounds like your mom is functioning more like a toddler than an adult, so perhaps that's something you could keep in mind. You've been through that stage before with your own kids right ? And it sounds like you have the day care sorted out.
My own mom is elderly and starting to forget things but since she lives close by I've been able to adjust bit by bit. I guess all I could say is try to enjoy them as they are now. You're clearly a caring and capable lady so don't worry if you have to change some things up on the fly.
Good luck !

Anonymous

Oh, that will be lovely but hard for you. It's so good that you have built in a time for respite so you can still work while they are there.

From dealing with my grandmother, who had dementia towards the end, it was being able to appreciate the person they are now and not compare to the old person. It was hard, incredibly hard, and we were kind of mourning her while she was alive. I tried to just live in the moment with her, and not get impatient at the same story or repeating myself, and making sure she was clean and dressed. I won't lie, it was really stressful and difficult but I am glad we had the time together with her.

If you can have time to recharge/mourn/rebound after their visit, it would be a good thing.

Thistle

Veteran

I cannot offer real advice as I have not yet had to endure. My grandmother is 88 and still able to live on her own. She is not as sharp as once she was, and she does love retesting the same story but always to new people. She also lives over 8 hours away. I feel guilty we haven't seen more of her, but traveling has been really hard for us with my work schedule, a small child, and another on the way.

You are in my thoughts and prayers. I understand what Ceit says about grieving while they are still with you. The person they'd are is not the person they were. It's hard as you already feel the loss though they are still with you.

Know that we are here as support for you. Wishing you the best.

April

Veteran

Yes, very difficult when the person you used to know is fading, or gone, yet there is still a person remaining.

I found this book helpful when my mother-in-law's dementia became significant: http://www.amazon.com/Keeping-.....0801850592 It clarified for me the ways in which our interactions with dementia patients need to change in order to meet their new needs, accommodate their anxiety (a major feature of dementia), and avoid frustrating them.

Janet

(website)

Veteran

First of all, I want to say I'm so sorry you're going through this. When I lost my mom, it was much more sudden (heart attack but then a month in the ICU, during which much of the time she was heavily sedated). I lost my dad suddenly too. So I don't know that slow decline, and it must be so very, very hard to experience. I'm sending you big virtual hugs and lots of strength.

However, I agree with Ceit's entire post. Do anything you can do to remain calm and open so you can be patient and enjoy the good in the time with her and your dad both. It sounds like you've got a great plan in place with the adult day care facility. I also think some downtime (maybe a little overnight or weekend getaway?) for you after the visit is a great idea -- a chance for you to decompress and process the visit emotionally, maybe even write in a journal about it.

In the midst of the challenge, try to remember that the time together, especially in these last years, is a blessing, as hard as it can be. I know it's tough when someone you love is acting in a way that's frustrating and even possibly hurtful (although unintentionally), but the more you can be mindful and open, the more rewarding the time is likely to be. As my mom got older, the more I accepted her as she was, the better our relationship was.

I'll be thinking of you. I hope all goes well!

Eliza

Veteran

Thinking of you, Viva. You have planned carefully for this time and how good that you have a bit of a schedule for her. I have a father with severe memory loss in an excellent place nearby and have walked this walk for decades.

In addition to appreciating the time with your folks, perhaps it would help to think of it as information gathering in service of securing their future plans. As you are looking towards a move to residential care for her, observations about how she manages day to day could be very useful to future caregivers, as well as in determining the urgency of a move and the nature of the facility. Having this lens may help you diffuse the more stressful times. How does she respond to routine, is there more upset or confusion with the "new" environment of your home, does she get flustered if rushed or pressured by a schedule, how does she handle transitions, how do she and your father interact, how is the incontinence issue? Initially, many people with these challenges navigate a daily routine to some degree in their own home, while a change of scene can unmask how hard things really are for them.

It's also a chance to see how your father is managing and what his care needs might be going forward. My parents were in a complex with multiple levels and different types of care (mother frail physically, father with cognitive problems). It worked out very well to have them in the same place, but each able to have their needs met over time. I am a big fan of minimizing transitions for the elderly and their families.

You are doing a very kind thing for them and giving yourself a gift as well. It will be hard, yet worthwhile. If anything comes up that makes you think things aren't safe due to judgment issues, that is obviously to be addressed. Otherwise, it is go with the flow time and it can be hard to realize that you can't fix everything or turn back the clock. Keep us posted and use all available supports.

Sorry for the long post. I could write a book on this topic.

jackiec

Veteran

I have no advice for you - what has been given sounds very helpful already. I just wanted to say good luck and I will be thinking of you.

TraceyLiz65

(website)

Veteran

I know with my mother that I was so grateful for my sense of humor during that time... Her short term memory was messed up so when I was at her house cleaning she would repeatedly say my name, then ask me turn off the light in that room when I was done... by the third time she said my name, I jumped in and said, "You want me to turn off the light when I am done." she looked surpirsed and asked me how I knew...
Know doubt this will be a tough three weeks! Try to focus on the good things about it as much as you can...Knowing time is precious can help your mood tremendously... When your mother is at the day care find something that makes your heart sing and lifts your spirit.. in other words don't stay home and clean.... Perhaps a lunch with a friend..Don't get too isolated...
Wishing you well!!!

Anonymous

I wish you the best during what will be a wonderful and yet stressful visit. I have a mother with very, very advanced Alzheimer's so I know the path you will have to take. I echo everything people said above. What helped me when my mother was still interactive was realizing I could easily re-direct her (change subject, venue, etc) when she got upset/angry/frustrated.- because of her memory problems she was unable to hold onto the bad mood or frustration.

One regret I have (and you are in a position to avoid this) is to start having serious financial discussions about the future (if this is an area where you are comfortable talking with your father). Long term care is very pricey so you should start looking at options. Until my father's recent death, I had no idea how worried he was about their finances- and unfortunately he sought the advice of a lawyer who made some unwise recommendations (and I am now dealing with the consequences of those actions). I also did not realize how very exhausting and depressing care for a person with Alzheimer's can be on the primary care giver. My poor father was reluctant to put her in a home (where she clearly belonged) out of financial concerns, but at the same time was clearly worn down with care and worry for her.

I hope your visit brings you both understanding and comfort.

crutcher

Veteran

I don't have any real suggestions other than to say I am so sorry that you have to go through this...
Let your heart lead your choices as you spend time with her...She is still your mom..just may not present the same face all the time...
I would have pictures where you have gotton together for good times int he past and make her smile as you recall funny things...A laugh can always get things off the launch to a better place...

kkards

Veteran

viva, i have no advice, but i wanted to say, take a deep breath and remember that this too will pass, and when its over, you will miss them. so try not to stress, becuase in the long run, this is a very short term issue. do the best you can, ask for help when you need, and don't forget to laugh.

rachylou

Veteran

At the ground level - my advice is itemise your worries and imagine yourself acting to respond to such events. It's sort of practice for the future. Like if your mom falls, imagine the paces to get her up again. How you'll grasp her. How you'll place your feet so you're both steady. That sort of thing. Imagine how you'll call yourself back to yourself, when she says the same thing for the tenth time and you're feeling the rise of annoyance. Or how you'll step back emotionally, to maintain calm, if she gets agitated. Don't picture it in your head; imagine it - how it will feel.

I'll tell you a story - this lady the other day, her wheelchair ran out of power. She'd been stuck in the same spot for hours. I come out of the bakery, and this girl comes running up with this story, asking if I have a power cord (as if any kind would do), and four European boys from out of nowhere follow pushing the lady into our parking lot. My co-workers come out to see what's happening, but keep their distance. Then everybody runs off. The girl decides to jump in her car and go looking for the lady's sister's apartment downtown. It was so nutty, it was funny to be honest.

Anyways, action item #1 - push her inside (man, if only the European boys had stayed...)

Action item #2 - get her some water (hello, out all day!)

Action item #3 - ask her if she needs to use the restroom (hello, out all day!) and just nod when she says she's wet (don't have a freak about nature, it's just nature)

Action item #4 - call the sister

Gaylene

Veteran

Ceit, Pam and Eliza have given you some good advice. My mom just passed away early this year after almost a decade of slow decline with Parkinson's and dementia so I know how hard it is to cope with changes you are witnessing.

I just wanted to say that even if her state often resembles that of a child, I think it's important to still treat her as your mother, not a toddler. Even when my mom was in her later stages, I still asked her for her advice and opinions when she was lucid enough to follow a conversation. Dementia, for most elderly people, is not an all or nothing state--the periods of confusion, anxiety, and hallucinations are usually mingled with times of awareness and relative clarity. I tried to take my cue from what kind of day she was having. On good days, I'd give her a manicure while she and I reminisced about the past. On not so good days, I tried to comfort and reassure her by helping her work through her confusion and anxiety and then try to distract her with a walk to check out what was growing in the garden or a ride to a local ice cream place to sit in the sun and have a cone. I also found it fascinating to turn the conversation back to times when she was a young woman or young girl because those memories seemed to hang in there the longest. The stories she recounted were more the kinds of things she'd have told a girlfriend than a daughter and I loved getting to see this side of a person that I thought I knew so well.

I guess the point I want to make is that dealing with a parent who has dementia can have its rewards; I think my mom and I got very close as she increasingly depended on me for psychological support as she wended her way through the final stages of her life. Until you've actually gone through something like this, it's hard to see that dealing with an elderly parent with dementia can be anything but a time filled with sorrow and loss. The reality is that you'll experience those emotions, but you'll also have times when you'll laugh and enjoy getting a glimpse of someone who was a person before she was your mother.

Anonymous

Oh yes, I forgot to add that, thanks Gaylene. I spent hours sitting with my grandmother looking at photographs and making notes on who everyone was, and also funny stories she told me (one was her brother-in-law came by when my grandfather was in WWII in England to check on her and he didn't like her spectator pumps and sawed the heels off! She was still indignant about it, almost 70 years later!)

I got some wonderful family stories and memories. She found it comforting to live in the past because present day was so confusing. I got to know which conversational tracks were dangerous and steer her away from them.

Janet

(website)

Veteran

Oh Gaylene, what wonderful advice. Yes, absolutely take advantage of this time to learn about the past. I always thought I would have more time with each of my parents. Now there are so many mysteries and unanswered questions.

cheryl

Veteran

I don't have any good advice but am sending good thoughts your way.

Beth Ann

Veteran

So glad you're having time with your parents, and I'll be praying for good memories, good health, and sleep and refreshment for you. I'd encourage you to build in little moments of self care: a short workout if that's relaxing for you, making sure you have your favorite tea or coffee in the house for a special cup in the evening or morning, a playlist of your favorite music, a short, uplifting read or movie in your Netlix cue. Planning these moments into your day might help you stay energized for a long visit.

Echo

Veteran

You have received some solid, practical advice already. I just wanted to chime in with Gaylene and Ceit. This may be your last opportunity to hear some stories from their original source. Try to allow yourself to enjoy the moments when your mum is present with you, or present in the past and relaying a story. Take notes, use a recording machine, ask about things you cannot hear or find out from anyone else. It is heartbreaking, but her story will soon be locked away, so listen to as much of it as you can.

And these will likely be the memories that will be some of the strongest for you when she goes into residential care or when you lose her. It is easy to wish away the time you have due to the stress, but if you can take things one day at a time and not lose your patience (much easier said than done), the memories will be so much sweeter.

Sveta

(website)

Veteran

I don't have an advice but wanted to wish you strength and endurance for this visit and for the future, Vivian. Knowing what a kind and thoughtful person you are I am sure you will make this visit as smooth as possible. Hugs!

DonnaF

Veteran

Have plenty of ice cream on hand.
Any change of routine can be very disorienting, esp. to your mother.
The filters come off or are greatly reduced.
Some of us become the dog they want to kick.

abc

Veteran

This is going to be a challenging time but as others have mentioned it can also be rewarding, as bass ackwards as that sounds now.

I don't have much specific advice but just remember, taking care of others is draining. You need time to recharge your own batteries too, and please take the small bits of time you need for YOU. I made it a point to get out of the house for 1 hour at the gym nearly every day when caretaking for my terminally ill father - and I think that saved my mental health, honestly. It's hard to do but worth it for everyone involved.

Hugs to you and your family.

Suz

(website)

Veteran

Vivian, I'm late here, but I wanted to add my voice to the chorus and send you a virtual hug. It sounds like a challenging yet potentially rewarding time for you.

I love Gaylene's and Rachy's advice. Itemize your fears and think of responses to those, while at the same time trying to treat your mother as an adult when she is lucid and doing the things you can genuinely enjoy together -- like sharing the memories she retains.

When my daughter (who has special needs) was smaller, and it could be difficult to live with her (to say the least), I used to aim for at least one activity a day that we both could TRULY enjoy in one another's company. I felt like that was a way to build our relationship and give it foundation. In your case, it's not foundation you want so much as buttressing for tougher moments -- the time of grief to come.

I also wanted to suggest that you expect the minimum of yourself during this time. I wonder if that 3 half mornings is quite enough respite. You may need down time in addition. I know that I would. Trying to leap too quickly from work to caregiving can be extremely tiring. I do this regularly and it is a challenge when you are trying to meet deadlines. Leaving space around your work could be a blessing to you.

viva

Veteran

Thank you all for your kindness and excellent words of advice.

Gaylene, so much of what you said reflects my experiences so far with my mom. There are moments of real clarity, and moments where she and I can interact almost like we used to, and I need to take advantage of those -- and continue to treat her with dignity.

Ceit and Janet, I have heard more interesting long-term memories from my mother since this illness took hold! She is British and always had great stories of her childhood, some painful stories of the war for sure, but still interesting ... those old memories do hang on so tightly. I'll remember to take her back there.

Echo, thank you for the advice to get a recorder out! I have thought about doing that for ten years, and this may be the last chance to do it easily.

Rachylou, thank you thank you for these words: "Don't freak out about nature, it's just nature." Anticipating my mother's incontinence does freak me out, although I know that after I have dealt with it once I will be okay. Your words are really helpful.

Suz, ABC, Beth Ann, and others, thanks for the reminder to take time for myself. I often feel that I am a pretty selfish person. I buy myself what I want, I get exercise, I find time to read, I have a pretty good life ... I am not one of those selfless people. But on the other hand, I feel responsible for other people and can see myself finding it hard to leave mom and dad in anyone else's hands. So I will follow your lead (and my therapist's) and schedule some time for myself each day if at all possible. Work should be quiet during their visit, which will help.

Thanks again, everyone -- Missvee, Thistle, April, Eliza, Jackie, TraceyLiz, Pam, Crutcher, KKards, Cheryl, Sveta, DonnaF -- for your support.

celia

Veteran

No advice, just big hugs.

Elle

Veteran

I'm so sorry to hear about your mom. Dealing with someone with Altzheimer's is very difficult and full of mixed emotions. Please take good care of yourself during this visit.

My late father and now my mother also had the disease and visits were a challenge. For us, it worked to have a very structured day with every day almost identical. Generally, we had one outing per day - to a movie, to a view point, for a drive with lunch out at a casual restaurant. It was a lot of work having them visit but I'm also grateful for the time we spent together.

I echo the recommendation to get a financial and health care power of attorney set up. They don't necessarily need to be used but better safe than sorry. Because banks aren't good about dealing with financial powers of attorney, it's also a good idea to have a family member on the main checking account. Make a record of all financial assets, account numbers, and passwords.

We used a paid care manager (recommended by a local social service organization) to help us evaluate my mother and decide what help and services she needs.

Let us know how the visit goes.

eds

Lots of good advice here! My mom had Alzheimers and I found that simply being in the moment was so important... to me and to her. She loved to go to the grocery store... I think it just felt familiar. I would put things back on the shelf as fast as she selected them, but she didn't notice. We would go home with a few things, money well spent. She also loved to go out for coffee, again a familiar ritual, I think. And just chatting, shooting the breeze, asking about my kids, over and over and over... but that is where she was. Looking back, those were some very precious memories. It is not an easy road, but with lots of love and a sense of humor you manage.

Aziraphale

Veteran

Oh, honey. I can SO sympathize. My mom is just like yours. Can no longer follow simple instructions, has occasional incontinence and general confusion. It's so hard to watch. Your idea of sending her to a adult day care a few times a week is wise. It's nice to have a bit of respite. The best advice I can add here is -- insofar as possible -- keep a sense of humour about the situation.

Hugs. xo

shiny

Veteran

Viva, we've been going through this for the last 2 years with my 74-year old MIL, who is now in a long-term memory care unit. She does not have Alzheimer's -- what you describe about your mom sounds an awful lot like my MIL. Very social, happy, etc, but repeats same questions over and over, or makes up stuff (confabulation). I won't go into too much detail since this is a public forum and DH's family is quite private, but feel free to reach out to me via messaging here, anytime.

But I will share this: FIL insisted on caring for MIL himself, and it was too much for him. It wore him down and he wound up in the ICU this spring; he passed away 6 weeks later. While he was in the ICU we took MIL in to our home, thinking we could manage her care. It was a real eye opener. A few hours' visit is one thing-- 24 hours is a different matter entirely. Three adults could not manage -- no idea how FIL with his frail health was handling it.

This is not analogous *at all* to caring for a toddler. At least you can tuck a toddler into a pack 'n play or put up baby gates or pick up the toddler and carry her out of the room when there's a tantrum or wrestle the toddler into diapers/a bath/clean clothes. And a toddler does not have the verbal skills to confuse you with confabulation.

Next we tried a parade of round-the-clock home health care aids, but that did not work either, as we discovered the health care aids were leaving before their shift ended, leaving MIL alone for who knows how long.

So long term memory care unit it is.

It's been difficult for the family to reconcile that decision, but it really is the best for her. She is safe and sound. Eating regular meals. Taking her medicine regularly. Having her hygiene looked after. Not going to wander out into the street and have a memory lapse. And when we visit her, it's easier to be present with her -- to live where she resides, which is the now.

My only other advice is, make sure you have all the legal stuff sorted while you can. Power of attorney, wills, health care proxies.

((((HUGE HUGS)))))

shiny

Veteran

Re: Incontinence... there's physical incontinence --- and then there's dementia where the person just forgets where they were, in the middle of what they were doing.

MIL had a dog. She blamed it on the dog. Now we realize, in hindsight, that it wasn't the dog.

We saw her very frequently, every week. Her neighbors saw her daily. None of us picked up on the dementia. The doctors tell us that is normal - those closest are usually the last to see it. It was the family members who live out of state who saw MIL only a few times a year, who first started questioning. We who lived closer and saw her all the time, just did not see it. Now it's clear as day, all the clues we missed over the years.

Okay I'm going to shut up now.