I'm a loving sis trying to find my place in my older sister's decline. (She is 65, I am 63 and we live within a few miles.). My concerns are when interacting with her, as her vocabulary and cognitive functions decline ... how much should I help her? Her husband is good with her, but he's got a ton of work/aging parents/church leadership commitments and can't be there (physically and mentally) all the time. Anyway we've always had a great relationship and I want to be there for her without her feeling I'm trying to take over. I tried to help clean out her overflowing pantry (7 boxes Cheese Nips, 8 boxes Goldfish, tons and tons of bags of chips stacked everywhere) but she got upset, thought I was saying she couldn't do it. (She couldn't) Another big deal to me is when she's talking, and loses a word/place name/ etc ... and the stalls in the conversation while seeking it, ... should I wait, or should I fill it in? She actually never comes up with it anymore, and will just laugh. Again, I don't want to jump in if in any way it marginalizes her.. just don't know. When I do interject I try to do it very low-key and quiet, usually with a smile. Any advice appreciated!!!
I think what you've more or less decided is to be there for her. There will come a time when more will need to be done to help out (no taking over!), but now is the time to enjoy what you can with your sister, while she can still engage in activities. Go for walks, visits places you both enjoy, have meals out or picnic somewhere nice, reminisce about those "good old days", whatever you did together before, without being suffocating.
The pantry being over-full isn't an issue really. It's nice to be organized, but if it's upsetting to her, avoid it. When she's forgetting a word, you can continue to do as you have. You could try offering a word, as a question, but if it tends to upset her, then just wait, smile and laugh it off when she does.
If you can, a chat with BIL may be in order. It's understandable that he has other "duties", but at some point he's not going to be able to juggle them all. He will have to prioritize and come up with options for dealing with each issue. It might be good to find out if this is his way of avoiding the situation. Certainly he is there for her sometimes, but focusing on other "duties" may be an avoidance of the elephant in the room. You can offer your support, but it shouldn't come down to you supplying all the care for your sister. Support is one thing, taking on eventual 24/7 care is another.
Ask if he needs help to address his parents' needs. He can hire out some services for them that he might be managing now, so he can spend more time with his wife - same for him as for you, this is the time to spend with her. She's only mildly declined. She can still enjoy time with him and joint activities. Eventually she may forget him and you and/or how to do things or even be able to get around or enjoy anything. NOW is the time to be together. Assisting with tasks and doing what she can't, that will come later.
Keep it light and laugh off the lost words,
You are doing it right though, just in the fact that you are there for her (and want to be) She is lucky to have you. Don't worry about getting the little details right, just enjoy her company and be proud of the kind of person you are.
I did watch a doc the other day though about how word games and exercises, can help slow down losing words
Continue to be her sister. Accept that she will never be who she once was. If it upsets her when you try to clean out her pantry, I believe that I would respect her feelings and not focus on organizing the pantry. If you are concerned about excess food or opened packages attracting bugs, I suppose that you could politely tell your brother in law about it.
What kind of a relationship do you have with your brother in law? Are you comfortable with speaking to him about specific issues concerning your sister’s wellbeing? Do you have any specific issues on your mind at this stage of her disease?
I know that you care for your sister, but I wouldn’t allow your brother in law to become dependent on you. He is responsible for finding a ‘work’ and ‘life at home’ balance.
As far as conversations go, play it by ear. If she gets upset with you and feels like you are speaking for her, don’t fill in words for her. If she feels relieved and appreciates that you are only trying to help her articulate her point, then help her a bit.
Best wishes to you and your sister.
Word search is like play "wheel of Fortune ", it could keep you both sharper, just give her time to do her own search before you jump in.
Do things with her that are fun, spa day for shampoo and pedicure. Make it a scheduled get together. Get an omelet after as brunch or dinner. Best friend stuff.
Choose your battles. Why toss the chips if it distresses her. Bring her easy fruit as an alternative.
Non-judgemently talk with her husband. Be genuinely supportive: how are you doing? This must be hard when you are also helping your parents. Have you considered a housekeeper to help out so you two can spend relaxing time together like day trips while she is still able. Let him know you feel sad seeing your sister change but don't make verbal assumptions about how he might feel.
It is hard to know when we are helping and or if they feel like we are taking any control they have left. Some days it will balance and other days it won’t - you just do your best - your love will help guide you 😊
I suggest you watch Teepa Snow video's on youtube. Those video's helped me to learn how to deal with my Mom who has dementia.
I wish you and your sister the best!
Jenna
a. regarding forgetting words: with practice you will find the best way to help her. Let her search a bit, then fill in the word she is looking for. You don't need to get frustrated, one frustrated sister is enough.
b. she may not be the same as before but as you say, "we've always had a great relationship and I want to be there for her". You just answered your own question. Don't take over, start by just being her sister. Visit often, she really needs you more than you know.
As for conversation, it requires patience to "wait" while your sister searches her mind for the word she wants to use. If it doesn't come or she laughs it off, just move along in the conversation as if she "filled in the blank." If it is vital information, write down a question about the topic that her husband can fill you in on later.
Your B.I.L is an active man. I get that - he needs to keep living too.
I suppose continue to talk to him about your sister. What you can do, what other caregivers he may need to add in as time goes on as more supervision is needed (ie paid aides).
If he is VERY busy, being the good son carer, the good churcher, the good worker, but also the good husband, well ok. But if hiding out in his activities, he may be overwhelmed or in denial. There will be grief too.
Sounds like you are finding out how to connect to your changing sister very well. Just keep following your head, heart & gut instinct & you'll do fine.
Tread very carefully here. Does bil work long hours? How much does he do for his aging parents? What are his church leadership commitments?
You need to remain a supportive and loving sister, NOT the caregiver. Are you retired? Beware of mission creep.
It can be maddening trying to communicate with some who is always searching for the right word to use. Don't make a big deal of it. I'm sure it's embarrassing for her and frustrating also. Give her time to come up with the right word, then offer what you think she might mean in a pleasant way. As for you, speak slowly, be in front of her, and use simple sentences. I like your approach of smiling when you interject.
When it gets difficult for you, make it known to her husband that he needs to reduce his commitments.
Its nice for you to "be there" but he should not lose sight that his vows say "in sickness and in health" and as a Christain man he needs to honor them. We had a lovely man in the Church whose wife had water on the brain which causes Dementia type symptoms. He cared for her 24/7. But he loved working in the Church. (She did too) When his expertise was needed, the Church women would get together and take turns watching his wife for him. When he had to place her, he was there every day. He had lunch with her and then stayed the afternoon.
So, do not allow this man to rely on you too much. He too will have to eventually place your sister. Caring for those with a Dementia becomes 24/7 care. You can offer to grocery shop, maybe sit with her while he goes to a meeting at Church but her primary care is his responsibility. You have your own life too.
Yeah, I got that vibe too.
As an elder in a church we helped plant, I can tell you that her husband will need to ask others to cover his responsibilities so he can care for his wife, just like he would hope she would have done for him. If he doesn't get coverage, oh well, the Lord will figure it out.
By all means watch the Teepa Snow videos (maybe do this with your BIL) and be helpful to him, but don't enable him to be uninvolved.
Wow. That is a great observation of how things can go.
I've seen this when a Grandmother comes to help with a new grandbaby (with the most loving best intentions!). In some cases, maybe the mix of personalities results in letting the new Dad off the hook from babycare & giving emotional support of new Mum.
The OP is not planning to take over! Just be a loving support. But, depending on BIL could indeed give him a free pass. 🤔
She's still your sister, and even though she's showing some signs of mental decline, please don't patronize her, and make her feel worse than she may already be feeling about it all.
And if she struggles to find the right word, oh well. And if she laughs about it, you laugh right along with her. Don't make it a bigger deal than it is.
You'll figure things out. Again, just let her know that you are there for her, and that you love her.
And it probably wouldn't hurt for you to start educating yourself about dementia. Teepa Snow has some excellent videos on YouTube, which would be a great place to start. I'm wishing you and your sister the best.