Sibling of Alzheimer patients

JDullea

I have two sisters and both of them have been diagnosed with Alzheimer's.  I'm looking for someone to share how it's been going for them as a sibling.  Both of my sisters have loving husbands there to care for them but I feel and know that I have to be careful not to step on their toes.  I want to help them but not overstep them.  Suggestions, support and advice would be appreciated.

GothicGremlin

Hi there -- my sister was diagnosed with early-onset Alzheimer's almost three years ago.  It's been rough, I won't lie, but I'm happy to share anything that might be helpful to you.

Rescue mom

Not a sib, but as a caregiver, I would lay down and kiss the ground you walk on if you would come in and watch my DH with Alzheimer’s, for a hour (or 2 or 3) a week, just to give me a break. If you’re close, maybe offer to run some errands—get groceries, a meal, prescriptions, etc.

Just don’t second-guess. Don’t say “but she looks good to me,” or “she sounded fine” after a 10-minute phone conversation. What happens 24/7 is often very VERY different from what you see or hear in a brief occasional visit. If you’re there often, then that doesn’t apply. But the spouse needs a lot that most people never think about.

JDullea

Has your sister experienced halucinations? These have been very difficult because I happen to be one of them and due to what she is hearing and seeing she has blocked my calls and has said she doesn't feel comfortable around me. This is so hard, I don't know how to deal with this?

French

I am not a sibling but a partner. I can give my experience.

My perfect sister and brother in laws, they exist, but unfortunately they don’t live near us. They take my partner 1 or 2 weeks per year. They help to organize it. Before and after, we have a long discussion. Their feedback is very important. I have a great chance, she is a nurse and her feedback is very helpful. They also never criticize, never say obvious things . I can discuss with them because I feel confident with them. I know they won’t discuss in my back. Strange, before I barely knew them because my partner wasn’t in good terms with them, but they are now the kindest and most helpful.

My hated sister in law (now I hate her but it wasn’t the case before) : she never came to spend time with her brother... but she criticizes a lot and gives a lot of advices to everybody about how I should do. She even criticized me in a family WhatsApp group. Now my parents in law think I confiscated their son’s phone (he still have it but is unable to use it). She tried to explain me that I need a deep therapy. She also reproaches me to take decisions without consultation given the family. She never called... I really don’t see why I would consult her... and moreover, my brother wouldn’t want that. He is still clearly expressing that he wants me to decide everything independently from his family.

I imagine that if you are here, you are not this kind of sister.

So in conclusion, for me, the perfect sister would propose help and organize it... so that I can have an afternoon, a day, a weekend, a week. Not obvious that she must propose to come home. I really appreciate to be alone in my home and to rest it is the best place. The perfect sister would propose holidays or activities to her Alzheimer’s parent so that I will feel completely relaxed. He is enjoying holidays and I can rest. After everybody will be happy.

My perfect sister would propose to discuss if necessary but wouldn’t impose her point of view. She can give it, it will certainly find its way at a moment. I think that it will came a moment when I will need somebody to discuss with before taking decision so I need somebody who is able to listen me and help me be sure I am taking the good decisions... i kind of mirror who reflects me the questions I avoid and helps me affirm what is difficult to say. I hope your brothers in law will have such sister or brother. What is sure is that I need more my partner family that mine because I consider they should be concerned about their parents and I am disappointed when they don’t.

Cynbar

Call your brothers-in-law, tell them you are genuinely concerned and want to help, then ask what you can do. Have some suggestions ready, based on your availability and/or finances. Offer to take your sisters for a planned outing --- a regular day or afternoon out, a longer visit at your house.You could offer to stay with your sister a couple nights so her husband could just get away. You could offer to bring a meal over on a scheduled basis, or have one sent in from a local restaurant. You could hire an occasional housecleaner. Your letter doesn't say how close you live to your sisters, but these ideas should get you started. Avoid saying something too general like "call me if you need anything" --- instead, make specific offers. But as mentioned above, offering your time to give the caregivers a break is the best gift possible.

Marp

I am the primary caregiver for my younger sister who was recently diagnosed with Alzheimer's.  She's 55.

It hasn't been horrible so far.  My sister lives with me now and I can still leave her alone for short periods of time so I'm not confined to the house.  I do feel badly leaving her alone and going off by myself somewhere because she can't do that - she can't drive alone and she doesn't know many people in our area.  So I worry she gets lonely.

Another sibling specific issue that arises is the usual sibling conflicts that we all have.  They still surface from time to time, even with the Alzheimer's.  It can be a challenge to determine whether something she's saying/doing is Alzheimer's related or if it's part of some ongoing sibling issue.  

Before responding to your query, I peeked ahead to some of the wonderful responses you received from other participants.  I second and even third the suggestion to reach out and offer some specific ideas of what you can do to help with your siblings.  The gift of time to get away is a true gem.

GothicGremlin

My sister doesn't have hallucinations, so I haven't experienced that. An odd thing that's cropped up recently - if I'm not there, and she calls me on the phone (she's barely able to use her phone these days - can't text at all), she thinks I can see what she sees, as if I'm there.  She catches herself and realizes I can't see what she's looking at because I'm not there, but it's -- odd.

I agree with everyone - ask your brothers-in-law what kind of help they need. I know I'm always happy for help with cleaning and grocery shopping. I don't know where your sisters are in terms of stages - early? mid-stage? advanced?  The more advanced they get, the more care your sisters will need, and the more stressed your brothers-in-law are likely to get.

My sister is at the beginning of stage 6, which means she's moving into an advanced stage of Alzheimer's. She's having trouble getting dressed, beginning to become incontinent,  comprehension is low, her vision is terrible.  I can't leave her alone at this point, so I have caregivers who spot me.  I get zero help from my brother, but thankfully I have cousins who help out, and I am so grateful to them.

Spending time with your sisters would be great - not only so that their husbands can have a bit of a respite, but also for you. They aren't going to get better, only worse, so spend time with them now.  One of the things I've done early and often with my sister is to listen to her, validate her, and generally make her feel like she matters, because she does.

JDullea

Shortly after getting the diagnose for both sisters I retired from my job so I could be available to assist them in anyway possible, both of my brother-in-laws know this.  I have spent time with both however my current issue is with the youngest, she has blocked my calls and says she doesn't feel comfortable with me, part of her hallucinations. It's so hard to understand how she can forget so many things but this story that makes me look bad seems to stay with her.  We have always been very close, in fact our family is very close which is making this so difficult.  I pray this story of me in her mind leaves soon and we can be together again.

rtg4111

So glad you posted. I too am struggling with my 78 year old sister in the moderate stage of the disease. Her 81 year old husband is very frail, almost completely deaf and very withdrawn. I have family friends that are their caregivers. I live 90 minutes away, work full time as a geriatric social worker and spend every other weekend with them to give caregivers a break. I handled establishing the trust, I’m their POA and I am my sister’s rock. Her kids are not involved. Her ST memory is gone and she has extreme paranoia directed mostly at the caregivers. She called me this morning and said she would like to have a going away party for her brain. She was laughing so I laughed also but the residual emotions today are paralyzing me. I figured today was a good day to explore alzconnected. Thanks for listening.